The communicative constitution of reproduction and reproductive genetic testing for sex and gender minorities: a queer standpoint approach

As sex and gender minorities face discrimination and substantial health disparities in facets of their health care, scholarly research has been undervalued in cultivating and assessing lesbian, gay, bisexual, transgender, and queer experiences. In particular, assisted reproductive technologies and reproductive genetic testing have become more commonplace tools for couples seeking to have a biological child. However, little is known about how sex and gender minority individuals and couples experience and make decisions about these technologies. This study takes a critical qualitative approach to investigating sex and gender minority experiences with reproduction and reproductive genetic testing. Using a communicative constitution of health approach and queer standpoint theory, the investigation includes data from a national sample of twenty-seven LGBTQ-identifying individuals or couples via semi-structured interviews. Results are first presented with descriptive themes emerging through analysis regarding the communicative constitution of reproduction, the communicative constitution of reproductive genetic testing, health knowledge production, and health decision-making. Data are then interpreted using critical health constructs of Foucault's framework of technologies, reproductive futurity, and queer futurism. The dissertation concludes by summarizing contributions made with queer standpoint theory and the communicative constitution of health. Implications include directions for future theory and research as well as clinical and practical recommendations to improve patient experience.

THE COMMUNICATIVE CONSTITUTION OF REPRODUCTION AND REPRODUCTIVE GENETIC TESTING FOR SEX AND GENDER MINORITIES: A QUEER STANDPOINT APPROACH by Robert B. Layne II A dissertation submitted to the faculty of The University of Utah in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Communication The University of Utah August 2018 Copyright © Robert B. Layne II 2018 All Rights Reserved The University of Utah Graduate School STATEMENT OF DISSERTATION APPROVAL The dissertation of Robert B. Layne II has been approved by the following supervisory committee members: Heather Elaine Canary , Chair 5/25/2018 Date Approved Jeffrey R. Botkin , Member 5/30/2018 Date Approved Robin E. Jensen , Member 5/25/2018 Date Approved Kimberly A. Kaphingst , Member 5/25/2015 Date Approved Michael K. Middleton , Member 5/25/2018 Date Approved and by , Chair of Danielle Endres the Department of and by David B. Kieda, Dean of The Graduate School. Communication ABSTRACT As sex and gender minorities face discrimination and substantial health disparities in facets of their health care, scholarly research has been undervalued in cultivating and assessing lesbian, gay, bisexual, transgender, and queer experiences. In particular, assisted reproductive technologies and reproductive genetic testing have become more commonplace tools for couples seeking to have a biological child. However, little is known about how sex and gender minority individuals and couples experience and make decisions about these technologies. This study takes a critical qualitative approach to investigating sex and gender minority experiences with reproduction and reproductive genetic testing. Using a communicative constitution of health approach and queer standpoint theory, the investigation includes data from a national sample of twenty-seven LGBTQ-identifying individuals or couples via semi-structured interviews. Results are first presented with descriptive themes emerging through analysis regarding the communicative constitution of reproduction, the communicative constitution of reproductive genetic testing, health knowledge production, and health decision-making. Data are then interpreted using critical health constructs of Foucault's framework of technologies, reproductive futurity, and queer futurism. The dissertation concludes by summarizing contributions made with queer standpoint theory and the communicative constitution of health. Implications include directions for future theory and research as well as clinical and practical recommendations to improve patient experience. TABLE OF CONTENTS ABSTRACT....................................................................................................................... iii LIST OF TABLES ............................................................................................................ vii ACKNOWLEDGMENTS ............................................................................................... viii Chapters 1 EXPERIENCING HEALTH DISPARTIES IN CARE AND REPRODUCTION: AN INTRODUCTION AND RATIONALE ...................................................................... 1 LGBTQ Population and Health Disparities ............................................................ 1 Health Disparities as Multilevel Problem ............................................................... 4 Inequalities in LGBTQ Reproductive Health ......................................................... 9 Current Project ...................................................................................................... 13 2 REVIEW OF LITERATURE ...................................................................................... 15 The Reproductive Genetic Testing Research Context .......................................... 15 Prenatal Genetic Screening ....................................................................... 18 Preimplantation Genetic Diagnosis........................................................... 19 Carrier Screening ...................................................................................... 20 Summary ................................................................................................... 21 The Communicative Constitution of Health ......................................................... 22 Health Narratives ...................................................................................... 26 Patient-Provider Communication.............................................................. 30 Health and Genetic Risk Communication................................................. 34 Theoretical Framework: Queer Theory and Feminist Standpoint Theory ............ 36 Queer Theory ............................................................................................ 36 Feminist Standpoint Theory...................................................................... 40 Queer Standpoint Theory .......................................................................... 44 Constructs of Queer Technology and Reproduction............................................. 46 Foucault's Framework of Technologies ................................................... 46 Reproductive and Queer Futurism ............................................................ 49 Research Questions and Conclusion ..................................................................... 52 3 METHOD ..................................................................................................................... 55 Reflexivity............................................................................................................. 56 Participant Recruitment ........................................................................................ 58 Participant Demographics ......................................................................... 60 Qualitative Interviews ........................................................................................... 61 Data Analysis ........................................................................................................ 64 Themes .................................................................................................................. 66 Summary ............................................................................................................... 67 4 COMMUNICATIVE CONSTITUTION OF REPRODUCTION AND REPRODUCTIVE GENETIC TESTING ........................................................................ 68 Communicative Constitution of Reproduction ..................................................... 69 Sex and Gender Minority Identity in Reproductive Care ......................... 70 Sociomaterial Interactions in Reproduction.............................................. 73 Communicative Constitution of Reproductive Genetic Testing ........................... 77 Reasons for Reproductive Genetic Testing............................................... 77 Concerns About Reproductive Genetic Testing ....................................... 80 Processes of Reproductive Genetic Testing.............................................. 83 Sociomateriality of Test Results ............................................................... 86 Health Knowledge Production and Decision-Making .......................................... 90 Health Knowledge Production in Reproductive Genetic Testing ............. 91 Reproductive Genetic Testing Decision-Making...................................... 95 Conclusion ............................................................................................................ 99 5 A QUEER STANDPOINT OF REPRODUCTION AND REPRODUCTIVE GENETIC TESTING ...................................................................................................... 100 Queer Standpoint Theory as Methodological and Analytical Tool .................... 101 Framing Technologies of Power and Resistance ................................................ 104 Technologies of Production .................................................................... 104 Technologies of Signs ............................................................................. 108 Technologies of Power ........................................................................... 111 Technologies of the Self ......................................................................... 115 Reproductive and Queer Futurism ...................................................................... 118 A Future of Reproduction? ..................................................................... 119 Queering the Future by Celebrating Difference...................................... 125 Conclusion .......................................................................................................... 126 6 DISCUSSION AND CONCLUSIONS ...................................................................... 127 Theoretical Implications: Creating New Theoretical Perspectives ..................... 128 Constituting the Communicative Constitution of Health........................ 128 Theorizing Queer Standpoint Theory ..................................................... 132 Differences and Similarities: A Return to Queer Standpoint Theory ................. 134 Practical/Clinical Implications and Recommendations ...................................... 138 Training Providers and Patients .............................................................. 138 Improving Health Care Organizations .................................................... 143 A Call for Systemic Change ................................................................... 144 Limitations and Future Directions ...................................................................... 145 Conclusion .......................................................................................................... 147 v Appendices A: INTERVIEW GUIDE ................................................................................................ 149 B: PARTICIPANT DEMOGRAPHICS ......................................................................... 152 C: THEMES AND CODES ............................................................................................ 153 REFERENCES ............................................................................................................... 161 vi LIST OF TABLES Tables 1. Participant Demographics ........................................................................................... 152 2. Foucault Framework of Technologies ........................................................................ 153 3. Communicative Constitution of Reproduction ........................................................... 154 4. Communicative Constitution of Reproductive Genetic Testing ................................. 155 5. Health Knowledge Production .................................................................................... 156 6. Health Decision-Making ............................................................................................ 157 7. Resistance / Freedom ................................................................................................. 158 8. Sociomateriality ......................................................................................................... 159 9. Patient-Provider Interactions ..................................................................................... 160 ACKNOWLEDGMENTS Large research projects almost never happen through singular individual efforts, they are a product of work created in partnership with faculty, friends, loved ones, and participants. In thinking about this study, I have been challenged over and over by my colleagues and instructors to take things a step further and dig deeper. The feedback that I have received from my peers, community partners, as well as communication scholars have helped to refine this work. I want to take this space to thank some of the people that assisted in this project. First, I would like to express my deepest thanks to my dissertation chair, advisor, and friend, Dr. Heather Canary. Dr. Canary opened her office, her mind, and even her home to inspire and encourage me throughout this journey. I have yet to meet a more generous, caring, and thoughtful person. The final year of my graduate work could have been a disaster if not for her sheer will to reach across hundreds of miles to advise me in what is a tense process of writing a dissertation. To my committee, both past and present, Dr. Jeffrey Botkin, Dr. Kimberly Kaphingst, Dr. Robin Jensen, Dr. Michael Middleton, and Dr. Lisa Diamond were instrumental in seeing this project through. I could always count on them to answer my endless parade of questions, provide their expansive expertise, and offer me professional guidance. I always felt supported, yet challenged, whenever I interacted with all of these wonderful people. I would also like to express my thanks to the students and coaching staff of the ix John R. Park Debate Society. I have been invested in forensics for over 25 years and the last 4 years have allowed me to work with some of the best people in the country. Special thanks to my fellow coaches: Mike, Jason, Loretta, Tiffany, Ben, Dakota, Mauri, Carlos, Aly, and Duncan for the fantastic conversations, delightful inside jokes, and strong shoulders to lean on during this process. My appreciation also runs deep for the Utah Center for Excellence in ELSI Research, which helped fund this dissertation and my graduate fellowship over the past 3 years. Thank you to Dr. Rebecca Anderson, Dr. Erin Rothwell, Dr. Erin Johnson, Dr. Bob Wong, and Dr. Nancy Rose for offering feedback and being so incredibly supportive of this work. I also want to recognize my family and friends that provided me with encouragement. In particular, Nick Gower; without him this project would have never been conceived. Nick listened to me when I needed an ear and would get excited with me when I thought about something new. Additionally, I want to thank Dr. Daniel Canary for offering me his home, dining room, and hot meals while I was in the thick of things. Finally, and not least of all, thank you to my participants for sharing your stories of anxiety, excitement, fear, and love. This project is for you. ix CHAPTER 1 EXPERIENCING HEALTH DISPARTIES IN CARE AND REPRODUCTION: AN INTRODUCTION AND RATIONALE As a gay man who has lived in several conservative cities in the United States, I have felt the uncertainty facing many queer individuals stemming from a discriminatory and biased health care system. A few years ago I was seeking routine medical care at a clinic in Lubbock, Texas. As some of my medical information and history was being taken by the provider, I revealed my sexual orientation to the physician. The provider stepped back and excused herself from the room. After a significant wait, a nurse was sent into the examining room to inform me that the visit was over and that I should seek care elsewhere. Stunned, angry, shaking, and nearly in tears, I hopped off the examining table and walked through the medical office. Standing in front of the receptionist desk, I embarrassingly asked if I needed to pay for the visit. I felt fearful that I might not get the medical care that I needed. I feared I would have to once again hide an important component of my identity to pass through a medical system plagued with homophobia and heterosexism. LGBTQ Population and Health Disparities Lesbian, bisexual, trans, and queer (LGBTQ) individuals and couples experience hostility, inaccuracy, shame, and disdain in receiving medical care from health providers (Eckstrand & Ehrenfeld, 2016). The Institute of Medicine (now the National Academies 2 of Sciences, Engineering, and Medicine) released a report detailing the incredible health disparities faced by LGBTQ individuals in the United States health care system (Graham et al., 2011). Graham et al. (2011) explain that health disparities converge into significant impacts for LGBTQ individuals and couples. In particular, Graham et al. (2011) note that health disparities for LGBTQ individuals include a lack of health care access, an increased risk for particular cancers and infections, a contributing factor to mental illness, and difficulties in participating in as well as gaining access to reproductive services. In October 2016, the National Institutes of Health (NIH) announced that the organization would designate sexual and gender minorities as a health disparity population for the purposes of NIH research. Such a formal designation for LGBTQ individuals and couples might normally be seen as a significant win for sexual minorities, if the state of health care and health research for queer people were not at best underwhelming, and at worst disastrous. Peterson (1996) explains that gay men and lesbian women face homophobia and heteronormativity from medical providers in ways that would otherwise be shocking - ranging from denial of care to misinformation to explicit malpractice. Cartar-Pokras and Baquet (2002) explain health disparities as "a chain of events signified by difference in 1) environment, 2) access to, utilization of, and quality of care, 3) health status, or 4) a particular health outcome that deserves scrutiny" (p. 427). As Eckstrand and Ehrenfeld (2016) explain, LGBTQ individuals and couples are always already experiencing unfairness and unjust difference in seeking and receiving health care. Ways that health disparities are described in policy have real consequences for both 3 marginalized groups and researchers. For example, the Minnesota and North Carolina Departments of Health explicitly removed mention of sexual orientation and sexual identity from their definitions of health disparity (Cartar-Pokras & Basquet, 2002). Such exclusions from policy definitions are detrimental for marginalized groups as the exclusion of sexual identity precludes receiving health care discounts (in the form of lesser insurance co-pays) and can also dissuade health care campaigns to target sex and gender minorities for both preventative and treatment health efforts (Braveman & Gruskin, 2003; Eckstrand & Ehrenfeld, 2016; Scarce, 1999). Moreover, exclusion of particular marginalized groups has a substantial impact on funding agencies' abilities to engage those populations through research and health promotion (Cartar-Pokras & Basquet, 2002). These political exclusions of specific sexual identities are troubling when faced with how research has examined health disparities for those with differing sexual orientation and/or gender identity. This becomes even more problematic when national funding bodies have refused to include specific marginalized groups in their considerations of diversity. As the money goes, so does the research to obtain those grant dollars. It is little wonder that the literature concerning health disparities for LGBTQ individuals and couples is shamefully shallow when compared to other marginalized populations (such as Black Americans and other racial groups, those living in poverty, and even women; Eckstrand & Ehrenfeld, 2016; Smedley, Stith, & Nelson, 2002). Substantial health disparities due to race, ethnicity, and socio-economic status have led to research regarding those identity categories to discern issues of inequity. African-American and Latinx individuals have faced both disparate and de jure discrimination in the reception of care and the implementation of treatment. For 4 example, Viruell-Fuentes, Miranda, and Abdulrahim (2012) indicate that structural and attitudinal racism is still a substantial factor in racial minorities receiving appropriate care and treatment. Fortunately for racial and ethnic minorities (if there could be a silver lining to health inequity), these disparities are well documented due to substantial funding efforts by entities like the state-level departments of health and the National Institutes of Health (NIH). As such, programs and policies are being positioned to eliminate health inequities of these marginalized groups (Adler & Rehkopf, 2008). Although it may be too soon to see if health disparity policies are making a significant impact on the disparities experienced by minority racial populations, the fact that strides are being taken to reduce inequality is always a good signifier of progress. Health Disparities as Multilevel Problem Due to the massive amount of research on health disparities, there is much that scholars have learned about conceptualizing inequity in health care for marginalized groups. Although I do not pretend that these considerations are specific to all marginalized groups (as they have largely not been applied to LGBTQ populations), I do acknowledge that there are opportunities for developing existing theoretical and clinical frameworks to include sexual and gender identity. In particular, Smedley, Stith, and Nelson (2002) note that health disparities can develop from patient, provider, and health system levels. Regarding patient-level factors, Mitchell and McCormack (1997) found that racial minorities will often delay seeking care from medical providers for reasons ranging from being perceived as "dumb" to being uncertain about the patient-provider interaction. Similarly, gay and lesbian patients have also declined to seek care for fearing unsupportive responses from providers (Rispel et al., 2011) and not knowing how to 5 engage providers in discussion about their identity (Stein & Bonuck, 2001). LaVeist, Nickerson, and Bowie (2000) found that minority patients were more likely to perceive higher levels of racial discrimination from their provider than nonminority patients. These perceptions indicate a distrust of medical providers, which can influence patient compliance with treatment protocols. Providers also have difficulty engaging marginalized populations that contribute to the problems of health disparities. Smedley et al. (2002) argue that provider racial bias and racial-cultural uncertainty may play a part in the development of health disparities. They explain that while there is little research on racial bias in provider interactions, it is likely that some providers hold stereotypical or racially biased perceptions (Smedley et al., 2002). In a prominent study on racial perceptions of black patients, van Ryn and Burke (2000) found that doctors were more likely to describe their black patients as being uneducated, less intelligent, abusers of drugs/alcohol, and noncompliant with medical treatments and advice. In addition, providers are also likely to be uncertain about particular ailments or conditions that may obstruct or confuse diagnosis (Smedley et al., 2002). For instance, a provider who does not recognize certain jargon (such as slang descriptions of anal sex) or does not ask specific probing questions of their patients (such as asking about intestinal issues) may have difficulty discerning symptoms or indicators of ailment. Smedley et al. (2002) argue that such difficulties are related to racial-cultural misunderstandings or uncertainty. These provider problems similarly exist for medical personnel in relation to LGBTQ patients. Hinchliff, Gott, and Galena (2005) found that practitioners' perspectives on gays and lesbians influenced their discussions with queer patients. In 6 particular, providers were embarrassed to have a conversation concerning sexual health and sexual health issues. Moreover, as Scarce (1999) explains, medical providers also might not know to even ask about sexual identity. Because racial disparities are always already present due to the visual clues of race, providers likely would not know an individual was queer without relying on effeminacy or masculinity cues (Eckstrand & Ehrenfeld, 2016; Massiah et al., 2004; Scarce, 1999). This inability to ask patients about their sexual identity is a provider-centric component to health inequality as without that information providers miss opportunities to discuss other health problems, such as colon polyps (due to anal sex) or specific forms of sexual transmitted infection testing (such as not testing anal or oral regions for gonorrhea and/or chlamydia; Scarce, 1999). Further, the health care system also contributes to the health disparities that marginalized populations face. Two large problems pervade health care systems that assist in persistent inequity: health literacy and health insurance. Parker, Ratzan, and Lurie (2003) explain that "health literacy has many dimensions, including what it means to be able to read, understand, and communicate important medical and health information during different phases of life" (p. 148). Health literacy is a substantial issue for many individuals navigating health care systems, but has a widening and compounding effect on minority groups. Lindau et al. (2002) found that racial minorities were less likely to understand prevention information and comply with health behaviors in preventing cervical cancer based on the jargon and "expert" attitudes of the system. While nonminority patients might not understand specific clinical or medical terminology, medical providers are also less likely to explain jargon to minority patients and family members (Kelly & Haidet, 2007). Multiple studies have shown that health 7 literacy is incredibly important for persuading patients to engage in both preventative behaviors and treatment compliance (see Nielsen-Bohlman, Panzer, & Kindig, 2004; Osborne, 2012; Zarcadoolas, Pleasant, & Greer, 2009). Additionally, improving health literacy as a means of reducing inequality has been a priority of many health communication scholars (Kaphingst et al., 2012; Paasche-Orlow et al., 2005). For queer individuals, health literacy is still a significant issue with implications for health and treatment (Eckstrand & Ehrenfeld, 2016; Scarce, 1999). Unfortunately, much of the research on health literacy that speaks to health disparities for LGBTQ individuals and couples focuses only on HIV/AIDS treatment and compliance (see Kalichman et al., 2000; Kalichman, Ramachandran, & Catz, 1999; Murphy et al., 2010). This research is limiting as it primarily speaks to gay men and in relation to the literacy of a single condition/infection. This is an incredibly important concern for LGBTQ individuals and couples, because there are a variety of health concerns and conditions that expand beyond sexually transmitted infections testing, diagnosis, and treatment for this particular marginalized community. Research focusing only on sexually transmitted infections undercuts and obscures other medical care questions that might relate to sexual identity. For example, Scarce (1999) points out that gay men have a higher propensity for colon polyps and cancer. Other scholars have noted that more research needs to be conducted on pharmaceutically transitioning transgender men and women (see KeoMeier et al., 2015; Kranz et al., 2015). The narrow focus of research on LGBTQ individuals and couples to sexually transmitted infections or mental health issues leaves an incredibly large gap in the research especially when considering the difficulties of reproductive care and testing for the same population. 8 Second, the health care system also relies on capitalist functions through the medium of health insurance. For example, Diehr et al. (1989) note that racial minorities are less likely to have health insurance. Even when minorities do have health insurance, racial disparities in health insurance persist both in terms of quality of insurance (coverage, deductibles, etc.) and access to insurance (being cut off from Medicaid) ; Berdahl, Friedman, McCormick, & Simpson, 2013). Not having good insurance is a significant barrier to receiving appropriate medical service (Smedley et al., 2002). Unfortunately, the difficulty in obtaining stable health insurance also is a substantial issue for LGBTQ individuals and couples. Prior to United States v. Windsor (2013) and Obergefell v. Hodges (2015), insurance policies could be revoked for LGBTQ family members without cause or explanation (Eckstrand & Ehrenfeld, 2016). Those court decisions concerning marriage equality, while a breakthrough (depending on perspective) for queer rights, still do not provide protections against sexual orientation and sexual identity discrimination in the form of denial of insurance coverage (Anastas, 2012; Eckstrand & Ehrenfeld, 2016). Cray and Baker (2012) explain that transgender individuals still have a difficult time receiving insurance due to a discriminatory belief that all transgender individuals will eventually want transitional surgery or medication. These discriminatory decisions have a profound effect on the ability for queer individuals to receive and access health care. Without insurance, health costs become an incredibly difficult expense to overcome and become a dissuading factor to seek health care and treatment (Miller, Kirk, Kaiser, & Glos, 2014). As health insurance is a primary method of payment for screening services like reproductive genetic testing (see Graf, Needham, Teed, & Brown, 2013), when LGBTQ patients have difficulty receiving health insurance 9 there may be difficulty in receiving reproductive genetic testing. It is clear that health disparities are a significant issue for LGBTQ individuals due to patient, provider, and health system level concerns. While prior research has focused on racial and ethnic concerns, there is an opportunity to expand the state of research for queer patients to overcome significant gaps in the health inequality literature. Previous theoretical and clinical considerations have provided an important initial framework for developing this body of literature, but researchers should be active in applying lessons learned about health inequality to queer marginalized groups. Inequalities in LGBTQ Reproductive Health This study provides a unique opportunity to engage in such an application by investigating how communication constitutes tenuous reproduction and reproductive genetic testing experiences for LGBTQ individuals and couples. As Lewin (2009) explains, biological reproduction outside of a traditional heterosexual relationship is littered with legal and social landmines. For example, in Goodridge v. Department of Public Health (2004), Justice Robert Cordy wrote that while some experts and traditional family advocates had questioned whether being raised by queer individuals and couples might be good for a child, a more pressing concern was whether gay men and lesbian women should be able to have children at all. While these kinds of homophobic legal decisions and arguments have become less frequent after a string of legal wins and greater public acceptance of homosexuality, the struggle to recognize the rights of LGBTQ individuals to reproduce children is still a very real experience for lesbian women, gay men, and transgender individuals (Franke, 2015). Further, even though reproductive technology and assistance has become more available to LGBTQ 10 individuals and their partners, that technology still has social and ethical considerations that have not been fully explored by ethicists and researchers (Franke, 2015; Komesaroof, 1995; Rivers, 2013; Schenker, 2011). Unfortunately, little is known about the rates and reasons for sex and gender minorities choosing specific reproductive options. But, research does indicate that there are unaccounted for differences between LGBTQ and heterosexual populations. For example, in Jensen, Martins, and Parks' (2018) study on fertility, perceptions of fertility were significantly earlier for lesbian and bisexual women than heterosexual women indicating that perspectives on reproduction may be different for sex and gender minorities for a variety of reasons. For gay men, decisions concerning surrogacy not only impact a gay couple, but also their female surrogates (Dana, 2010; Lev, 2006; Lewin, 2009). In some states, laws surrounding surrogacy are patchworks of heterosexist legal precedent that have thrown families into turmoil (Dana, 2010). As Dana (2010) explains, one surrogate had contracted with a gay male couple to carry their offspring. At the end of pregnancy, the surrogate claimed parental rights over the children produced from the surrogacy and successfully sought child support from the couple. For lesbian women, undergoing in vitro fertilization (IVF) or engaging with sperm banks/donation facilities is not only costly, but is also plagued with uncertainty in the potential failure of the technology or significant unknowns concerning the genetic condition of the sperm/sperm donor (Bernstein, 2010; Cahn, 2009; Eckstrand & Ehrenfeld, 2016; Hayman, Wilkes, Halcomb, & Jackson, 2013, 2015; Schenker, 2011). Chambers, Sullivan, Ishihara, Chapman, and Adamson (2009) report that an IVF cycle can cost on average $12,000, which makes 11 engaging in attempts to reproduce a costly endeavor. In addition, as Cahn (2009) notes, IVF and other assisted reproductive technologies (ARTs) are not guaranteed to be successful. Each effort at pregnancy excludes people in more economic categories as there are high fixed costs for each attempt (Cahn, 2009; Chambers et al., 2009). Failed attempts also can result in emotional and psychological distress concerning the inability to conceive and cost of conception (Cahn, 2009). Furthermore, as basic biology dictates, sperm from a biological male is required for pregnancy to take place. Thus, sperm banks and/or sperm donors are often used by lesbian women seeking to get pregnant. But just as surrogacy is clouded in legal issues, sperm donation and sperm banks also operate in a makeshift set of laws and legal precedent that oversee and underregulate these activities (Cahn, 2009; Rivers, 2013). Among the issues of sperm banks and donations is the matter of donation anonymity. Many donors are protected by law and have contracts that require maintaining anonymity concerning their identity (Bernstein, 2010; Cahn, 2009; Layne, 2013; Rivers, 2013). Donor anonymity can create a host of problems from potential emotional issues for the child in attempting or wanting to know their biological father to uncertainty concerning the risk of potential genetic based disorders and illnesses (Cahn, 2009, Schenker, 2011). The latter issue drastically complicates management of a pregnancy, as risks for genetic disorders have become a factor in whether individuals continue with a pregnancy or decide to abort a fetus (Schneker, 2011). Without knowing more about the donor of the sperm, lesbian women are gambling with the genetic material of their potential offspring. For heterosexual couples, reproductive genetic testing is offered by many clinicians as a means of testing the fetus for possible genetic abnormalities or risk for 12 genetic conditions such as the potential for certain types of cancer (Benn, 2002). These tests screen for particular genetic markers that can provide information concerning risk of illness or disease for pregnant parents (Wienke, Brown, Farmer, & Strange, 2014). While reproductive genetic testing has a growing body of research, most of that research has been solely focused on how heterosexual couples have undergone, engaged with, and experienced those types of tests. This represents a substantial problem for researchers examining reproductive genetic testing as it indicates an exclusionary bias of a participant population. Even though calls to expand various reproductive genetic research to LGBTQ individuals have been made (see Aas & Delmas, 2016; Crossley, 2005; King, 2012), little research has been conducted with this significant class of individuals. As more lesbian couples are turning to in vitro fertilization, intrauterine insemination, and sperm banks, the choice for what genetic material makes its way into combining with a human egg is ever present. Ross et al. (2014) argue that while there can be disadvantages to these procedures, the psychosocial benefits for lesbian women are substantive enough that each ART procedure is recommended for most women who are attempting to get pregnant. For heterosexual couples, most dyads expecting children have likely already met and been introduced to the other individual providing genetic material. This information is a source of privilege and knowledge that often is not afforded or sometimes even wanted by lesbian couples (Mundy, 2008). Reproductive genetic tests are becoming more commonplace as they look for particular genetic markers, which might have been passed to a newly conceived child. Without donor information or even the understanding that the genetic information of the donor may be important, lesbian couples are left without essential knowledge concerning their potential 13 child - thus, prenatal genetic screening may be filling that gap in knowledge. Current Project This project constitutes a qualitative examination of reproductive genetic testing communicative practices to better understand the experiences of LGBTQ couples and individuals as they navigate reproductive uncertainty regarding biological reproduction. Previous studies concerning reproductive genetic testing such as prenatal genetic screening have focused primarily on clinical effectiveness of these genetic tests (Bianchi et al., 2014; Devers et al., 2013; Kupperman et al., 2014), the ethics of using those tests (in particular, as a means of creating a designer baby; Parens & Asch, 1999; Remennick, 2006; Ross, Saal, David, Anderson, & American Academy of Pediatrics, 2013; Skirton, Goldsmith, & Chitty, 2015), or attitudes and beliefs of medical and genetic practitioners (Benn et al., 2014). Unfortunately, little research has been conducted on how LGBTQ patients experience reproductive genetic testing. This study serves three important purposes: (a) narrowing the gap in knowledge about sex and gender minority experiences regarding intersections of reproduction and reproductive genetic testing, (b) developing a theoretical framework for understanding the standpoint of queer experiences, and (c) uncovering and understanding how power dominance and resistance play out in discourses regarding reproductive genetic testing. In the following chapter, I review the applicable literature concerning reproductive genetic testing, the communicative constitution of health, theoretical considerations of the project including queer theory and feminist standpoint theory, and queer perspectives for analysis including Foucault's framework of technologies and the concepts of reproductive and queer futurism. Chapter 3 outlines qualitative inquiry as an 14 appropriate approach to understanding the lived experiences of LGBTQ patients as they engage in conversations about reproductive genetic testing with their medical providers and genetic counselors. In Chapter 4, I examine the themes derived from the analysis of the sex and gender minority narratives including the communicative constitution of reproduction and reproductive genetic testing, health knowledge production, and health decision-making. Chapter 5 focuses on a queer theoretical reading of the data using Foucault's framework technologies, the concepts of queer and reproductive futurism. In Chapter 5, I offer queer standpoint theory as a way of making sense of the variety of LGBTQ participant experiences. Finally, in Chapter 6, I discuss the theoretical, methodological, and clinical/practical implications of this study. Further, I examine the limitations to the project and suggest future directions for research based on the project. CHAPTER 2 REVIEW OF LITERATURE To be able to make an appropriate medical diagnosis, the health care provider relies not only on objective measures but on the subjective historical narrative of his/her patient. Dealing with the physician is similar to the coming out process that gay men experience all their lives. Each encounter requires a decision about what, if anything, they will share with health care providers. - Martin Schwartz, Gay Men and the Health Care System This chapter reviews the relevant literature and conceptual frameworks to be used in this examination of health care policy, practices, and communication in relation to LGBTQ individuals and couples. In particular, this synthesis of research is intended to explicate the theoretical basis for examining communication related to prenatal genetic screening for queer individuals. To that end, the following sections will address (a) reproductive genetic testing, (b) the communicative constitution of health, (c) queer theory and feminist standpoint theory as theoretical frameworks, and (d) constructs of queer technology and reproduction. The Reproductive Genetic Testing Research Context Global interest in genomic research culminated in the Human Genome Research project, which included goals to map and sequence human DNA as well as invent and improve DNA sequencing technology (Collins et al., 1998; Govindraju & Chandra, 2015). Genetic testing processes and technology were introduced in the United States during the 1980s, meeting much consternation about the ethics of and possible 16 discrimination stemming from the testing of human genetics (Billings et al., 1992; Wauters & Van Hoyweghen, 2016). In consideration of these concerns, during the planning stages of the 2002-2003 National Human Genome Research Institute the United States federal government developed the CEER (Centers of Excellence in Ethical, Legal, and Social Implication [ELSI] Research) program to integrate and translate genomic research to larger populations and different publics ("Centers of Excellence in ELSI Research," 2018). Genetic testing has been defined by McPherson (2006), as "the analysis of human DNA, RNA, chromosomes, proteins and certain metabolites in order to detect heritable disease-related genotypes, mutations, phenotypes or karyotypes for clinical purposes" (p. 123). Genetic tests identify particular genetic markers to determine heritable conditions. Three primary purposes of genetic tests have been classified by genomic research: (a) diagnostic, (b) predictive, and (c) reproductive (Burke, 2002; McPherson, 2006). Diagnostic testing is conducted to determine whether an individual has or does not have a specific genetic disorder (Burke, 2002). These types of tests are typically what most think of when discussing genetic testing. For example, epileptic encephalopathy can be detected through a diagnostic genetic test (MercimekMahmutoglu et al., 2015). These types of tests can be performed on adults, fetuses, and/or children (Bos, Towbin, & Ackerman, 2009). As diagnostic genetic tests are meant to confirm or rule out specific genetic diseases or disorders, they can affect decisionmaking about treatment (McPherson, 2006). Predictive testing looks at the risk or probability that an individual will express a certain genetic disorder or condition. McPherson (2006) explains that predictive tests can 17 examine presymptomatic conditions or the predisposition for a disorder. In presymptomatic genetic testing, a test is looking for a genetic condition that may have a delayed onset. For example, Trump et al. (2016) examine how presympotmatic gene panels can broaden early diagnosis of seizure and developmental disorders. Huntington's disease has been frequently examined in relation to presymptomatic disorder testing and the effectiveness of predicting the onset of the disorder (Lee et al., 2015; Ross et al., 2013; Ross & Tabrizi, 2011). In targeting the predisposition of a disorder, predictive genetic testing assesses the potential risk without the knowledge to the degree of certainty that a genetic condition will occur (McPherson, 2006). For instance, Domchek et al. (2013) examined the use of multiplex genetic testing to understand the susceptibility of individuals to contract cancer. Although the degree to which cancer would occur was not calculable, Domchek et al. (2013) argue that these predisposition tests could allow for future health planning by individuals. Finally, reproductive genetic testing (RGT) is defined in this study as any form of genetic testing or screening (amniocentesis, carrier screening, prenatal screening, preimplantation screening, etc.) that is intended to provide information about reproduction, potential reproduction, reproductive decision-making, and/or pregnancy. McPherson (2006) notes that reproductive genetic testing can be utilized to not only provide information, but also assist in family planning based on results from the screening. Reproductive genetic testing is typically classified into three subcategories of testing: (a) prenatal genetic screening, (b) preimplantation genetic diagnosis, and (c) carrier screening. 18 Prenatal Genetic Screening Prenatal screening methods can vary significantly by type and practice, but share similarity in that the process is done before birth and is typically an attempt to determine if there is an abnormality with the fetus (Benn, 2002; Scott, 2007). Prenatal screening can involve genetic as well as nongenetic screening techniques. For example, ultrasonography is a common screening method for most expecting mothers to experience (Everett, 1997; Salomon et al., 2011). Ultrasonography uses low frequency sound waves to determine density of material that can be translated into visual images (Salomon et al., 2011). These images then allow medical providers, in a noninvasive way, to determine if there are physical concerns with the fetus (Everett, 1997; Salomon et al., 2011). Ultrasonography, as means of prenatal screening, can only track physical abnormalities that can be seen. Thus, prenatal genetic screening/testing has become a more frequent way of examining a fetus for potential chromosomal and genetic disorders (Benn, 2002). One of the most frequently used prenatal genetic tests is the noninvasive prenatal test (NIPT), which uses a blood sample from the mother to look for genetic markers and conditions during pregnancy (Devers et al., 2013). NIPT is sometimes confused with or called noninvasive prenatal diagnosis, but Devers et al. (2013) explain that testing from NIPT only establishes risk and that a follow up diagnostic test is recommended to confirm particular conditions. For example, NIPT may discover a positive result for trisomy 21 (Down syndrome), but most recommendations argue that more specific diagnostic test should be utilized to confirm and more definitely determine results (Chiu et al., 2011). Most research concerning prenatal genetic testing has been focused on either the 19 ethical implications of testing (e.g., Schnecker, 2011), the effectiveness of the tests (e.g., Norton, Rose, & Benn, 2012), or the impacts to the patient (e.g., Rothwell et al., 2016). Unfortunately, very little research has examined the communication and decision-making relationship for prenatal genetic testing. Knowing what we do about health disparities for LGBTQ individuals, gay and lesbian individuals and couples may experience communication regarding these tests differently than heterosexual couples. For example, Hayman et al. (2013) indicate that lesbian women attempting to become mothers face heteronormativity and discrimination from the health care system and providers. The fight to even conceive a child is such an arduous one for lesbian mothers and gay men that decisions concerning termination take on even greater importance (Agigian, 2004; Hayman et al., 2015). After a thorough examination of the literature, no published studies have been found that examine LGBTQ patients and their communication patterns concerning these genetic tests. Preimplantation Genetic Diagnosis Although prenatal genetic screening tests the fetus, preimplantation genetic diagnosis (PGD) genetically screens embryos that are created in vitro. Sermon (2002) explains that PGD was established in the early 1990s as a means of preventing termination of pregnancy for couples that had a high-risk for specific genetic disorders. Typically, PGD is used for those patients with a high risk of having an offspring with a genetic disorder or for those undergoing IVF to improve their chance of pregnancy (Wilton, 2002). PGD captures a single cell (or cells in some tests when embryos are slightly more developed), which are then tested for genetic conditions or specific enzymes (depending on the specific testing done; Braude, Pickering, Flinter, & Ogilive, 20 2002; Harper, 2017). These tests then can provide information about which embryos are potentially more "genetically viable" for IVF implantation. The fact that embryos can or may be discarded based on genetic disorders has been an ethical and legal quagmire. In Italy, couples were legally banned from being able to use PGD until 2012 when the European Court allowed couples to access assisted reproductive technologies and PGD (Turillazzi, Frati, Busardo, Gulino, & Fineschi, 2015). Fears from Italian lawmakers were that individuals might create "designer children" and thus, PGD should be disallowed. In the early 2000s, there was significant concern, worldwide, that potential parents could be choosing characteristics of their child (such as height, intelligence, gender, etc.) and may have the possibility of using PGD to select for sexual orientation (Dahl, 2003). Spurred by epigenomically-disavowed studies conducted by Hamer in 1993, who coined the term the "gay gene," concern arose from LGBTQ communities that gay identity could be selected away (O'Riordan, 2012; Perbal, 2015). Even though such genetic selection of particular traits is not technically possible at this time, disability scholars warn that being able to potentially choose genetic markers to discard is an ethical issue that requires more analysis (see Camporesi, 2010; Clancy, 2010; Hens et al., 2013). Carrier Screening Whereas prenatal genetic screening and PGD test the child or embryo, carrier screening (as a means of reproductive genetic testing) tests the potential parents for genetic conditions. Carrier screening utilizes DNA sequencing to assess the potential risk that a gene, genetic marker, or genetic disorder will be passed to future biological children (Holton, Canary, & Wong, 2017). Thus, carrier screening is typically a genetic 21 test that is done before pregnancy through a blood draw or other means of DNA sampling. Carrier screening is an increasingly critical component to decision-making and preparedness in family planning (Edwards et al., 2015; Holton et al., 2017; Lazarin & Haque, 2016; Yarnall, 2015). As genetic screening technology has progressed over the last decade, expanded carrier screening (ECS) has become a testing strategy that focuses on a multitude of genetic conditions (Cho, McGowan, Metcalfe, & Sharpe, 2013; Edwards et al., 2015). ECS can provide potential parents information that can inform decisions about whether to consider pregnancy or try other means of having a child. Carrier screening can look for markers of thousands of genetic disorders, diseases, and conditions (Edwards et al., 2015; Holton et al., 2017; McPherson, 2006). Further, as testing technology has become more complex and certain markers become mapped, genetic testing laboratories have boasted that tests can detect over 10,000 genetic mutations (Holton et al., 2017). Summary Reproductive genetic testing is becoming more widely used as a way of gathering information and making decisions based on genetic risk. Even though testing can be completed at various stages and through several forms of screening, each test is designed to provide information about pregnancy, reproduction, and reproductive decision-making. Because LGBTQ individuals and couples have to go through extraordinary means to have children, their use of and communication about reproductive genetic screening technologies is critical to understanding how reproductive health is discursively constituted by these patients. 22 The Communicative Constitution of Health Although health communication, as a subdiscipline, has been in existence for over 30 years (see Hannawa et al., 2014; Kim et al., 2010; Parrott & Kreuter, 2011; Zook, 1994), much of the conceptualization of health communication has focused on context (Babrow & Mattson, 2011; Zook, 1994) or approaches (Kim et al., 2010; Parrott & Kreuter, 2011). To broaden the scope of health communication beyond approach, context, and biomedicine, Zook (1994) defines health communication as "the study of personal and sociocultural symbol usage for the purpose of developing, maintaining, and adapting ontological health" (p. 367). In conceptualizing ontological health, Zook (1994) writes it is the "meaningful (i.e., authentic) embodiment of biological, psychological, and social experience" (p. 364). Further, Field-Springer and Margavio Striley (2017) expand on Zook's definition by arguing that "cultural backgrounds shape what we believe is valuable concerning health, and these health values shape our shared understanding of maintaining health" (p. 8). Babrow and Mattson (2011) note, "…the communicative interweaving of bodily sensation, cognitive-emotional sensemaking, and various layers of social structures and practices fabricate the social meaning of physical states and the physical meaning of social states" (p. 19). These definitions indicate that health is communicatively constituted as an ontological, social, cultural, psychological, and biological embodiment of practices, processes, and discourses. Thus, I offer the communicative constitution of health as a new perspective to understand health experiences. The "communicative constitution" movement in the communication discipline has its roots in organizational communication (Putnam, Nicotera, & McPhee, 2009; Weick, 23 1979), but has expanded to other subdisciplines such as interpersonal communication (Manning, 2014), family communication (Segrin & Flora, 2011), and group communication. In organizational communication, the communicative constitution of organizations (COO) approach argues that communication "embodies the material (composition or elements), the formal (framing or forming), and the efficient causes (principles or rules for governing) that brings organizations into existence" (Putnam et al., 2009, p. 23). Essentially, discourse is an essential component of an organization and organizing. If communication is such an important part of constituting an organization, why not use social construction as a theoretical perspective? CCO research contends that the social is simply one way of formulating phenomena (Fairhurst & Putnam, 2004; Putnam et al., 2009). While social construction is similar to the constitutive approach, the difference exists in how forward communication is in assessing an organization. Social construction scholars, such as Hacking (1999), might argue that communication is the organization. However, CCO scholars argue that organizations are still more than communication. Organizations are still material, process, and value-laden, which mean that "communication" is not equivalent to "organization" (Putnam et al., 2009). Interpersonal communication scholars have also taken up the constitutive approach to understanding interpersonal relationships, behaviors, and phenomena. Manning (2014) proclaims, "the future of interpersonal communication research and theory is no doubt constitutive" (p. 432). As Craig (1999) notes, the constitutive approach encounters the metatheoretical components of communication in that it asks scholars to reach across theoretical perspectives to demonstrate middle grounds. The 24 constitutive perspective for interpersonal communication places a premium on "how relationships, identities, and tasks are in the communication (‘constituted by it') rather than…the communication in the relationships or between two or more people (‘containing it')" (Manning, 2014, p. 432). Similarly, the communicative constitution of health (CCH) understands that communication is centered in how health is understood, experienced, and interacted with by individuals, organizations, and systems. The CCH approach also recognizes that health is more than communication in that it involves biological materialities that impact health outcomes. These material realities are an essential part to reproduction and reproductive genetic testing in that DNA, pregnancy, genetic disorders, genetic testing technology, and assisted reproductive technologies are material elements to the experience. Though biological materiality and the biomedical perspective have some importance, reliance on those constructs also has significant limitations. Specifically, Alonso (2004) argues that reliance solely on the biomedical model of health has led to somatic reductionism that can decenter the patient experience. For example, when providers are only concerned about health outcomes, the process of health can become binary. Are they healthy or are they not healthy? Is the treatment effective or not effective? These are important questions, but they also oversimplify the patient experience. To some degree, models such as "from society to cell"/ "from cell to society" and other ecological perspectives have attempted to create intersections between social relationships/interactions and biological conditions (Fiese et al., 2016; Street, 2012). Unfortunately, these models are typically pathway oriented rather than integrative, 25 meaning that health is situated in a directional effect based on variables rather than being always already constituted by social and biological variants. For example, Fiese et al. (2016) examined childhood obesity and make claims about ecological relationships ranging from cell to child to country to culture. These models are a limiting theoretical approach as they assume variable pathways exist prior to understanding the reciprocating nature of biological and social conditions. Moreover, models such as "from cell to society" do not place a priority on communication that has been shown to influence and be influenced by health outcomes. The communicative constitution of health departs from the social construction approach to health communication in that social constructionists argue that the body is both shaped and constrained by society (Shilling, 2012). As Lupton (2012) notes, "The primary focus of social constructionists is examining the social aspects of biomedicine, the development of medico-scientific and lay medical knowledge and practices" (p. 21). Conceptualizing the communicative constitution of health develops a middle ground between biomedical and social construction paradigms that recognizes the sociomateriality of health and the body. Leonardi (2013) argues that while "materiality" is based on material (which does not require a physicality) and form (or process), "sociomateriality" leverages that social conditions implicate and constitute material conditions. Further, Leonardi (2012) writes that sociomateriality recognizes "that all social action is possible because of some materiality" (p. 32). This symbiotic relationship between materiality and the social within sociomateriality acknowledges the importance of both bio-material conditions (i.e., genes, cancer, viruses, etc.) and social construction (i.e., culture, psychology, ontology, etc.) when centering communication in 26 the health context. Similar to social construction, my conceptualization of the communicative constitution of health recognizes that discourse shapes realities of our health behaviors and experiences (Dutta, 2008; Lupton, 2012; Sobo, 2016). Lupton (2012) explains that discourse is "a coherent way of describing and categorizing the social and physical worlds" and that "all discourses are textual, or expressed in texts, inter-textual, drawing upon other texts and their discourse to achieve meaning, and contextual, embedded in historical, political, and cultural settings" (p. 2). Discourse, then, embodies health, health behaviors, and health experiences. Further, CCH argues that communication is more than an element or component of health. Communication is a centralizing factor of health in relation to the social and material. As such, health cannot exist without communication. Communication allows health to be interpreted and understood beyond the degree of mortality and pain produced by biological impulses. CCH proffers that health is more than biology and treatment. Like CCO, it is important to recognize that health and communication are not equivalent, but in a constitutive relationship. To better articulate the discursive nature of reproductive health, importance of interactions, and the topical orientation of the RGT experience, I examine three areas of health communication research for this project: (a) health narratives, (b) patient-provider communication, and (c) health risk communication. Health Narratives Health narratives have been widely studied by health communication researchers regarding a broad range of contexts and processes (Sharf, Harter, Yamasaki, & Haidet, 2011). Interestingly, genetic testing research has also studied the use of health narratives 27 to understand reproductive genetic testing decision-making (Etchgary et al., 2015; Hamilton et al., 2016), coping (Crozier, Robertson, & Dale, 2015; Werner-Lin, 2016), as well as information sharing (Beard, Amor, Di Pietro, & Archibald, 2016; Berghs, Dyson, & Atkins, 2017). Health narratives are, as Steihaug and Malterud (2008) describe, "stories about bodies" (p. 188). In essence, these stories allow us to tell ourselves, our familial/social networks, our providers, and our communities what our bodies are doing, feeling, changing, and becoming (Muller, 1999). Health narratives have been developed from Fisher's (1984) claim that humans are homo narrans or human storytellers. Essentially, humans tell stories or narratives in constructing, communicating, and making sense of lived experiences, identities, and relationships (Trees, Kellas, & Roche, 2010). Health narratives, like most narrative inquiries, are "stories where events, actions, or experiences are presented together as seen from the perspective and experiences of the individual" (Steihaug & Malterud, 2008, p. 189). Sharf et al. (2011) agree with the bulk of the previous definition, but also claim that health narratives can be expanded beyond the individual. Sharf and Vanderford (2003) note that health narratives can be constructed by communities and societies as "master narratives" that are socially constructed and promulgated from larger cultural contexts. For example, Lindenmeyer, Griffiths, and Hodson (2011) explore how families create collective health narratives that situate family as central to health. Although most health narrative scholars would agree individual-centered narratives are primary, other stories or discourses do get constructed to serve larger purposes. Beyond serving individual and societal/cultural goals, health narratives have been argued to serve more specific purposes in communicating and constructing health 28 identities, relationships, and experiences. Arntson and Droge (1987) offer a typology of four functions of health narratives represented in health narrative scholarship: (a) health narratives as sense-making, (b) health narratives as asserting control, (c) health narratives as transforming identity, and (d) health narratives as warranting decisions (see Arrington, 2015; Iannarino, 2018; Sharf & Vanderford, 2003; Vanderford, Jenks, & Sharf, 1997). Initially, health narratives serve to make sense of health, disease, and illness. Stories provide a framework for individuals to understand the complexities and complications of their experiences (Arntson & Droge, 1987; Bute & Jensen, 2011; Sharf & Vanderford, 2003; Trees, Kellas, & Roche, 2010; Weick, 1995). In telling their stories, participants are able to lay out their individual and context specific narratives, which have potential to be moments of agency and healing from suffering (Brody, 1987; Sharf & Vanderford, 2003). The telling of these stories requires a level of what Sharf (2009) describes as "narrative competence," which is how individuals are able to effectively make sense of and connect their stories to their experience. A critical component to using narratives as a sense-making tool is the necessity for retrospection (Bute & Jensen, 2011; Sharf et al., 2011; Sharf & Vanderford, 2003; Weick, 1995). The ability to have some retrospective or temporal distance suggests that "individuals with the most distance from an event might be less likely to express doubt about their experiences and more likely to integrate those experiences into their broader stories of self" (Bute & Jensen, 2011, p. 228). Health narrative has a second important function in assisting the narrator in asserting control over health situations such as illness, disease, and reproduction matters. Mulcahy, Parry, and Glover (2010) argue that cancer patients sometimes utilize their 29 narrative as a means of deriving control over having to wait and be patient for their treatment to both begin and work. Carter (2010) explains that health narratives can provide a sense of command over pregnancy, miscarriage, and other issues of reproduction. Sharf and Vanderford (2003) highlight that the purpose of asserting control is to both give voice to patients that might be spiritually injured and to tell their story of their injury (and its outcomes) into the future. For example, Wentzer and Bygholm's (2013) study indicated that women in an online miscarriage support group utilized their narratives as a way of voicing their loss and to talk about how they will eventually have a child. Third, health narratives assist in transforming identity. Because patients can experience intense changes to their health, the effect of health issues can also impact an individual's identity (Charmaz, 1994). Sharf and Vanderford (2003) note that such challenging changes to health become a focal point for who the individual is and how their identity now intersects with the health issue. A number of studies have examined how the human immunodeficiency virus (HIV) infection can become an identity transforming health issue especially for LGBTQ individuals (see Davis, 2002; Davis et al., 2006; Grace et al., 2015; Owen & Catalan, 2012). Ceballo, Graham, and Hart (2015) argue that health narratives can assist in helping the patient to take in the illness as an intersection of their identity or by becoming a hallmark feature of a transformed identity. In their study, Ceballo, Graham, and Hart (2015) found that African American women experiencing infertility used narratives to express how their identity had been reshaped. The final purpose of health narratives is that they warrant decisions. Sharf and Vanderford (2003) explain that during illness or a health issue, narratives help the 30 storyteller to position themselves ethically into the situation. These stories open up space for the patient to assess and recognize the value of actions and decisions (Sharf & Vanderford, 2003). Iannarino (2018) explains that health narratives allow the patient to express the decisions-making process and reasons for specific decisions related to their health issue. Thus, by telling their story, the patient is disclosing the values, ethics, reasons, process, and decisions. In engaging in health narratives, patients are communicatively constituting their health experience. This indicates that patients are not necessarily passive recipients of health decisions and outcomes. Instead, the patient actively constitutes their identity, relationship to power, decision-making, and health knowledge through the stories they tell. Patient-Provider Communication Although patients and providers individually contribute to the formation and persistence of health disparities, their interactions (or lack thereof) also have significant influence in creating inequity. Burton and Dimbleby (1995) explain that communication between medical provider and patient is one of the most sacrosanct relationships to be formed in the health care system. They argue that without effective and trusted communication that the patient-provider relationship disintegrates, which can result in detrimental health outcomes for the patient (Burton & Dimbleby, 1995). First, Northouse and Northouse (1998) explain that there is a transactional nature of communication that occurs between various parts of the health care system (and in particular the patient and provider). Information is being shared between individuals, through verbal, written, and nonverbal means, in an effort to reach a particular goal 31 (Northhouse & Northhouse, 1998). These goals concerning health care decisions have been discussed by other scholars (see Edelmann, 2000; Hall, Roter, & Katz, 1988; Roter & Hall, 1989), but can differ between the patient and the provider. For example, a doctor might want to get through the "script" to move things along and reach a clear diagnosis, while a patient might be more concerned with emotional and psychological issues pertaining to their health concerns. Roter and Hall (2004) indicate that these goals are not intrinsic to role, but rather can vary based on a variety of issues. In their study of female providers, Roter and Hall (2004) found that those providers have a goal to attend to their patients' emotional and social needs, presumably due to their own interactions as patients in the health care system. Northouse and Northouse (1998) note that four major factors can disrupt and create barriers to the patient-provider communicative relationship: (a) power differentials between provider and patient, (b) the use of jargon/technical communication by medical providers, (c) patient role uncertainty, and (d) uncertainty in roles over care. Many of these factors are discussed in the previous chapter regarding health disparities, but it is important to note how these disruptions implicate medical inequities. Initially, perceived and real power differences between the medical provider and patient serve as a substantial barrier to the communicative relationship (Beisecker, 1990). Although power is typically afforded to the provider due to medical expertise (see Goodyear-Smith & Buetow, 2001), power can also be held by patients (Beisecker, 1990). For example, patients can shop for providers and treatment plans, which allow them to make decisions about their health care issues (Roter & Hall, 1992). Unfortunately, when expectations of particular power dynamics are violated, then providers and patients may be at odds 32 (Northouse & Northouse, 1998). Worthington and Meyers (2003) studied how providers and patients discussed HIV testing and found that the acceptance and effectiveness of the provider/patient power dynamic had a significant relationship with anxiety concerning testing procedures and outcomes. This power differential is incredibly important to health inequality as queer patients experience uncertainty about who is in charge of the visit. Because power can be misused and abused (as it often is against marginalized populations), perceptions of power imbalances can dissuade patients from seeking care and thus creating to health inequity (Worthington & Meyers, 2003). Uncertainty of the patients' particular role can create miscommunication between the patient and provider (Northouse & Northouse, 1998). For example, a patient may have a belief that the provider is the arbiter of all health concerns rather than the patient being a partner with the provider in making health care decisions. The health literacy literature provides an excellent explanation for how this disruption occurs and helps to create health disparities. As previously discussed, health literacy is partially a lack of understanding concerning the health care system and/or components of that system which can include ambiguity of policy and the system's use of specialized language (Zarcadoolas, Pleasant, & Greer, 2009). For example, the use of jargon can be offputting and confusing for patients. Hadlow and Pitts (1991) found that only 36% of terms commonly used by health care professionals were understood by patients. This type of technical jargon can decrease patient satisfaction and can result in professionals relying on patronizing language (Jackson, 1992; Keaton & Giles, 2015). Further, the lack of health literacy can explain the uncertainty of a patient's role in their health care decisions. As Nielsen-Bohlman, Panzer, and Kindig (2004) note, 33 patients are often not medical professionals nor experienced in the health care system. Doctors often assume that patients know what they are doing and how they should go about complying with treatment plans (Zarcadoolas, Pleasant, & Greer, 2009). This assumption is typically incorrect and can lead to perceptions that the patient is uneducated or unintelligent (van Ryn & Burke, 2000), thus intensifying health inequality issues for minority groups. Finally, uncertainty of roles over care and treatment involve patients, providers, and family members (Northouse & Northouse, 1998). This barrier to patient-provider communication typically revolves around lack of information concerning responsibilities of care. Davis and Fallowfield (1994) indicate that providers are often responsible for these mistakes in exchanging information as doctors and physicians may simply refuse to entertain questions or do not encourage questions from their patients. This may be as modest a difference as asking "What questions do you have?" versus "Do you have any questions?" What is important is that when patients do not feel like they are a part of the process, they do not ask questions, which can result in detrimental medical outcomes (especially when concerning medication timing and dosage; Sleath, Roter, Chewning, & Svarstad, 1999). These conditions of uncertainty become more difficult when patients from marginalized groups lack trust and the perceived ability to challenge interactions. Thus, breaking the script to define and stabilize roles in care is difficult for minority groups (Eckstrand & Ehrenfeld, 2016). Patient-provider communication plays an important role in establishing quality care for marginalized groups. Research that specifically addresses the interaction disruptions between provider and patient for queer patients would be helpful in 34 expanding how this particular group experiences uncertainty and health inequality. Developing questions about patient-provider barriers would be useful in pinpointing crisis points in the patient-provider communication process. This targeting of points may be helpful in understanding the interaction of patient-provider communication in particular contexts. For example, Katz et al. (2004) focused their inquiry of patientprovider communication on the context of colorectal cancer screening for African American church members. Similarly, investigating specific contexts of patient-provider communication in reproductive genetic testing allows researchers to understand how contextualized conversations about medical care, testing, and decision-making influence the patient-provider communicative relationship. Health and Genetic Risk Communication Because genetic markers do not come with precise certainties concerning the expression of a specific genetic disorder or disease, health providers (including obstetricians, gynecologists, genetic counselors, primary care physicians, etc.) communicate the risk of the possible disorder or disease to their patient. Brun (1994) explains that health risk communication is dependent on the context and presentation of information that then influences the patient's perception of risk and successive decisionmaking. Although Trevena et al. (2013) found that health risk communication could be publicly-oriented or patient-oriented; they argue that providers engaging in health risk communication should utilize specific practices to improve informed decision-making. In particular, Trevena et al. (2013) explain that providers should use quantitative risk estimates, simplify information being provided to the patient, apply the risk appropriately to the patients' demographics, take into account the patient's health literacy, and provide 35 visual representations of risk to the patient. Hakone et al. (2016) note that providers using personalized risk communication tools that are tuned to their patient's health literacy facilitates patient comprehension and enhanced patient decisions. Similarly, Edwards et al. (2013) argue that personalized communications of risk for genetic illnesses by providers to their patients are effective in achieving informed decision-making. Unfortunately, literature suggests that risk communication from providers to patients undergoing genetic testing is underwhelming in both changing patient behaviors as well as providing an understanding of genetic risk to the patient. Initially, Hollands et al. (2016) found that providers communicating genetic risk did not motivate patients to engage in risk-reducing behaviors. Essentially, patients did not utilize the risk information to take steps in reducing that risk. Further, providers communicating genetic risk have difficulties in achieving patient understanding of that risk (Etchegary & Perrier, 2007). Braithwaite et al. (2004) found that patients either misperceived or misunderstood genetic risk after provider communication. Klitzman (2010) found that even patients that received genetic counseling still had misunderstandings of their genetic risks for specific genetic disorders. Because risk perception relies on health literacy and subjective valuations of that risk (Austin, 2010), patients risk is then experiential. As such, genetics risk communication is the link between health threats and reactions to those threats (Shiloh, 2006). This indicates the ways that genetic risk is both communicated by provider and understood by patient is a communicatively constituted process of understanding health. Recognizing that health is communicatively constituted is important for describing patient experiences, but theoretical application is critical for understanding how those 36 experiences play out in discourses of power and knowledge. Theoretical Framework: Queer Theory and Feminist Standpoint Theory The use of queer theory and feminist standpoint theory in the context of health communication has been lacking. Because these theories may provide explanatory mechanisms for how patients (especially those marginalized by their sex and/or gender) experience and engage in the communicative constitution of health, further examination is warranted. This section describes queer theory and feminist standpoint theory before arguing to combine these theories into queer standpoint theory. Queer Theory Queer theory is a product of various scholars who have attempted to understand gender and sexualities through binary construction and deconstruction (Halperin, 2003). Theresa de Lauretis is credited to have coined "queer theory" at an academic conference in the early 1990's (de Lauretis, 1991; Halperin, 2003). The term was created as a means of destabilizing the complacency that de Lauretis determined had come over gay and lesbian studies (de Lauretis, 1991; Halperin, 2003). Prior to its incorporation into academic circles, "queer" was used pejoratively to mean "weird" or "sick" (Halperin, 2003). Those negative predispositions exist even today; for example, a research colleague took issue with my use of "queer" in relation to family studies even though the term was not used pejoratively. For many academics and activists, the term "queer" is used in illustrating difference (Morland & Willox, 2005) and uniting the various factions that exist within nonnormative sexualities and sexual discourses (Yep, 2003). It is important to note that queer theory is not simply an investigation or 37 examination of gay, lesbian, bisexual, asexual, intersexed, or transgender issues/experiences. In fact, Smith (2003) outlines the amalgamation of tenets that queer theory has generated to help explain difference: (a) all categories are falsifications, especially those that are viewed as binary (Butler, 1993); (b) reality and the discourse surrounding that reality are socially constructed (Butler, 1990; Halperin, 2003); (c) all human behavior can be read as texts and are significant for understanding that behavior (Butler, 1990, 1993); (d) these texts form discourse about power and knowledge that can reveal dominance and resistance (Morland & Willox, 2005; Sedgwick, 1990); and (e) deconstructions of categories and perceived deviance can best be accomplished by queer readings of the performative texts created by behaviors (Smith, 2003, p. 346). I briefly discuss each of these tenets and their implications for research concerning LGBTQ populations and health communication. First, Butler (1993) makes clear that categorizing behavior especially into binaries creates problematic discourses for those cavorting at one end of the binary or those that fit neither component of the binary. For example, queer theory disavows the relationship between classifications of homosexuality and heterosexuality (Morland & Willox, 2005; Sedgwick, 1990; Sinfield, 2004). It is because heterosexuality as a term is used by individuals and society to both require and repudiate homosexuality through homophobia and heteronormativity that these binary categories serve to reproduce and maintain heterosexuality as a normative status (Komesaroff, 1995; Sedgwick, 1990; Yep, 2003). Queer theory seeks to expose and disrupt these categories of sexuality to unsettle the power that exists within this particular binary relationship (Smith, 2003). Second, Halperin (2003) notes that reality and the communication that pervades 38 that reality are both socially constructed. Social construction is a key component to queer theory as without this concept, identity formation and understanding would be difficult to uncover. In particular, the ways society and culture engage in creating specific realities help to establish norms and rules that govern behavior (Smith, 2003). For example, rules (or etiquettes) exist concerning dating rituals and behaviors. Those rules are not always already established, they are instead constructed by society as expectations that guide particular behaviors in a dating scene (such as the expectation that men will pay for a date). There is no a priori reason why men should be expected to pay for a date, but that norm is followed as it is a socially constructed norm. Next, queer theory argues that behaviors and actions by humans are significant and can be read as texts. Butler (1993) notes that human behaviors and experiences can be documented and placed into textual readings. For example, ethnography uses the writer as an instrument to uncover experience. Having bared an experience through participant-observation and/or interviewing, the writer converts the experience to text to be read and analyzed (Van Maanen, 2011). Sedgwick (1990) notes that individuals and groups present signs and symbols in the ways that they act and behave in the course of everyday events. The choice to dress in a suit and tie, while seemingly innocuous, could be a sign of power, conformity, or resistance depending on the context. The fourth tenet to queer theory is that the texts can reveal discourses and constructions of power and resistance. Brady and Schirato (2011) argue that researchers can uncover particular components of power when we isolate texts. For example, the ways medical providers speak to LGBTQ patients might uncover a way of displacing lesbian women in the health care setting (Hayman et al., 2013). Only by producing, 39 collecting, and analyzing those texts can scholars (especially those critically-oriented) better understand how queer patients engage medical personnel. Finally, the last tenet explains that scholars can best deconstruct problematic categories through queer readings of text. Halperin (2003) explains that static categories of sexuality identity and gender are constraining to both researchers and participants. Queer theory is based on instability and willingness to destabilize constructions of normativity that might otherwise be accepted. For example, queer theorists have examined gay men in the military (Belkin & Bateman, 2003) and transgender bathroom discourse (Shultz & Shultz, 2016). These inquiries are efforts both to understand how power infiltrates discourse and to disrupt those discourses by offering alternative explanations to normative formations of reality. In addition to these tenets, queer theory has been expanded as a means of examining difference. Kirsch (2000) argues that the unstable components of experience and desire make classifying all sexual behavior untenable. Instead, researchers ought to pinpoint places of divergence and celebrate the deviating behavior as part of the normal experience of one's experience. Essentially, Kirsch's (2000) argument is that scholars ought to recognize that differences in experience and behavior are bound to occur regarding sexuality and gender. When we are exposed to these differences, we should recognize and celebrate them as a means of incorporating those moments into the fabric of our humanity. This, like most critical scholarship, is a call to action. It is a call to do something that betters the world around us and intrinsically makes life better for those who live at the margins of society. Additionally, it is important to note that queer theory is rarely used in 40 examinations of health and organizational communication even though calls for its use have become more prominent within scholarly communication studies circles (Ashcraft, 2014; McDonald, 2015; Yep, 2003). Because this study investigates LGBTQ genetic screening communication experiences, queer theory provides a valuable theoretical lens for data analysis. Queer theory provides an important contribution in not only understanding queer patient - provider communication, but also helps to provide a framing point for that experience. Though queer theory has critical explanatory power, I argue that the theory would be more useful in conjunction with other theoretical frameworks - in particular, feminist standpoint theory. Feminist Standpoint Theory Like queer theory, feminist standpoint theory is a means of celebrating difference of experience. The body of literature forwarding feminist standpoint theory (or simply standpoint theory in some academic circles) relies on four major principles in constructing this epistemological and methodological approach: (a) Knowledge is socially constructed; (b) marginalized groups have particular insights into phenomena based on their experiences, knowledge, and social location; (c) research should begin with the position of those that experience marginalization; (d) scholars should embrace the historical and material intersections of individuals and groups beyond considerations of psychology. First, Harding (2004) and Hartsock (2004) both argue that knowledge is socially constructed in that knowledge is derived and interpreted from a set of social realities that are informed by differences based on social location and position. Thus, feminist standpoint theory articulates that these differences are derived from points of social location, which are connected to our spatial, material, political, and symbolic 41 relationships (Ashcraft, 2014; Harding, 2004). In essence, feminist standpoint theory (FST) acknowledges that differences exist from a multitude of pathways and that these differences are influenced by the historical intersections of identities such as race, class, and gender (Harding, 2004). As such, a key tenet is that women are fundamentally different from not only men, but also each other (Jaggar, 2004; Weeks, 2004). Second, some theories of sex and gender have attempted to differentiate women and men's experiences as different - but, then homogenize women's experiences as being the same. Jaggar (2004) explains that due to historical differences based on a variety of identity markers, women will have and are having different experiences at the intersection of different positionalities. Thus, those who are marginalized have experiences and knowledge that provide keen insights into phenomena that may otherwise be missed by more dominant narratives or discourses. In Faulkner and Lannutti's (2016) study concerning the use of feminist standpoint theory in analyzing lesbian and bisexual women's sexual and relational health knowledge in online text and video sources, found that lesbian and bisexual women's experiences were addressed more frequently in videos than in text sources. Faulkner and Lannutti (2016) argue that the health sources used to improve lesbian and bisexual sexual health is better understood from how a lesbian or bisexual woman might experience those media. Their use of feminist standpoint theory informs their call for better textual health components that speak more specifically to a broader range of individuals including lesbian and bisexual women. Hartsock (2004) points out that standpoints are not simply perspectives or viewpoints, but rather a point of making visible something that was otherwise hidden. In 42 uncovering the marginalized social locations of the other, researchers can critically reflect on the difficulties and complexities of difference (Harding, 2004; Hartsock, 2004). The theory then helps to produce knowledge that is derived from the material conditions, social location, and lived experiences of individuals from a particular frame. Feminist standpoint theory is different than many social theories because it requires an examination of frames using historical and intersectional experiences. Thus, in the third principle, feminist standpoint theory is particularly powerful because it asks the scholar to hear multiple standpoints and make corrections to errant or harmful dominant narratives (Ashcraft, 2014; Hekman, 2004). For example, Goh (2013) interviewed Appalachian women attempting to interact with information and communication technologies (ICT). In her analysis using feminist standpoint theory, Goh (2013) uncovered discourses of distrust and materiality that influence, structure, and repudiate ICT usage by women living in rural West Virginia. As Goh (2013) points out, feminist standpoint theory can be utilized as a method to forward nondominant narratives surrounding a phenomenon to explore discontinuities and fractures within participant group accounts. Finally, it is important to note that feminist standpoint theory attempts to embrace the historical and material intersections of individuals and groups and thus avoid a more psychologically-derived envisioning of gender, sex, and identity (Hirschmann, 2004). Hirschmann (2004) criticizes psychological derivatives of gender as constructing gender as something that one becomes, rather than gender as an amalgamation of a person's history and material conditions. By only focusing on the psychology of the individual, scholars lose access to important competing or parallel realities that might be taking place 43 within the same context. As such, feminist standpoint theory is a call to recognize and prioritize marginalized standpoints (Ashcraft, 2014; Collins, 1991, 1997). Although feminist standpoint theory does offer some unique advantage for analysis, the perspective is also lacking when it comes to analysis. Feminist standpoint theory has not and does not cross over into queer readings of data. The very nature of feminist standpoint theory is to place a prioritization on feminist readings and analysis of phenomena. As such, simply adding queerness to the intersections that and discourses that feminist standpoint theory attempts to expose is at best not the intention of the theory and at worst heteronormative. At best, Hirschmann (2004) acknowledges that feminist standpoint theory was intended to look at intersectional points that were revealed by feminist readings of analysis. Simply adding queer readings into the mix, without acknowledging the body of work created by queer theory, would be a compulsory attempt at shoe-horning feminist standpoint theory into answering questions it was not purposed to answer. For example, in Faulkner and Lannutti's (2016) work, their use of feminist standpoint theory is focused on the experience of lesbian and bisexual women. This works because women are at the forefront of their analysis. At worst, utilizing feminist standpoint theory to analyze queer experience smacks of heteronormativity. In essence, such a use of FST would deprioritize queer identity for the sake of gender. This critique has been leveraged by the scholars in critical race theory in relation to feminist scholarship (Yosso, 2005). For example, critical race theorists have argued that the use of feminist standpoint theory to examine racial issues that intersect with gender issues have prioritized the discussion on gender (Allen, 1999). Thus, feminist standpoint theory ought to be used in way that does not deprioritize certain 44 forms of marginalization, such as oppression experienced by queer bodies. Queer Standpoint Theory Although queer theory and feminist standpoint theory are entrenched in the critical paradigm, these two theories are rarely used in conjunction with one another. Understandably, one might not initially conceive of utilizing queer theory and feminist standpoint theory together due to epistemological concerns. Queer theory is derived from postmodernism, arguing that identity is fluid, universal truth claims are suspect, and differences exist among individuals (Butler, 1993; Halperin, 2003; McDonald, 2015; Sedgwick, 1990; Smith, 2003; Yep, 2003). Feminist standpoint theory argues that marginalized populations can develop a shared understanding and potentially a common identity or identity markers (Collins, 1991; Hartsock, 2004). These two epistemic starting points are different, but not necessarily incompatible. O'Leary (1997) argues that feminist standpoint theory can recognize multiple standpoints rather than a singular collective experience, while Kirsch (2000) argues that queer collectivity through identity and community is essential to queer theory. Additionally, Hirschmann (1997) notes that postmodernism and feminist standpoint theory stem from social construction, which argues that identity is established, negotiated, and disciplined by societal and familial relationships (Beasley, 2005; Butler, 1990; Douglas, 1970; Rhoads, 1994; Shilling, 2012; Sinfeld, 2004; Vance, 1998). To make this theoretical relationship more fully realized, Krane (2001) makes an explicit argument for integrating feminist standpoint theory and queer theory to study lesbian experiences in sport. In her essay, Krane (2001) contends that although queer theory avoids categorization and attempts to deconstruct those categories, queer identity 45 still plays a role in the lived experience of LGBTQ individuals. I argue that without a fuzzy frame of a queer identity, queer community, as Kirsch (2000) advocates, would be impossible as the term "queer" would lose all meaning. Krane (2001) explains that by tying the two theories together, researchers can study cultural phenomena in a way that better explains the lived experiences of gender and sexual minorities. If queer theory and feminist standpoint theory are not entirely incompatible, an argument could be made that queer theory ought to be imported into feminist standpoint theory. In fact, Krane (2001) did just that by calling for a combining of queer theory and feminist standpoint theory over a decade ago, but very little research and theoretical construction has answered that call. I argue that the examination of LGBTQ interactions with their provider and/or partner concerning genetic screening would be an excellent means of applying both queer theory and feminist standpoint theory. I offer four principles that guide my use of queer standpoint theory (QST): (a) Knowledge is socially constructed through experience and social position, (b) queer bodies (based on their experience, knowledge, and social location) have particular insights that form discourses about power and knowledge that can reveal dominance and resistance, (c) QST begins with the positionalities of queer individuals and communities as the starting point for research, and (d) QST scholarship deconstructs categories and embraces the historical, material, and social intersections of individuals and communities. Although queer theory typically rejects the principalization of its inquiry (see Butler, 1993), I argue that even queer theorists create project by project guidelines to frame (ever so briefly) their critiques. For example, in Shugart's (2001) article examining Ellen, she creates a framework for her analysis to structure her reading of 46 parody within the television show. Dunn (2015) similarly analyzes Brothers & Sisters using queer theory via a utilization of claims developed by queer theoretical scholars to situate their research. Finally, Eguchi, Calafell, and Files-Thompson (2014) analyze Noah's Arc utilizing queer theory to examine black same-sex relationships depictions on the cable show. Similarly, I use these principles as guiding mechanisms that are not a priori rules, but rather a flexible framework to ensure rigorous analysis. By melding the theories together, a queer standpoint might be examined to help understand the lived experiences of those LGBTQ individuals and couples navigating decisions in reproductive services. Constructs of Queer Technology and Reproduction Although queer standpoint theory provides an excellent epistemological and methodological starting point, the use of reproductive genetic testing technologies and practices require further scrutiny. To help understand the experiences of sex and gender minorities while communicating about these genetic tests, two frameworks are used in conjunction with the principles of queer standpoint theory: Foucault's framework of technologies as well as the concepts of reproductive and queer futurism. These two sets of constructs help to situate the experiences of LGBTQ individuals and couples in relation to theoretical queer concepts. Foucault's Framework of Technologies Communicative strategies to both dominate and resist have been addressed by Foucault (1988) in his framework of technologies. Foucault (1988) argues that four typologies of technology exist as matrices to reason: (a) technologies of production, (b) 47 technologies of sign systems, (c) technologies of power, and (d) technologies of the self. These techniques, or technologies, are rooted in discourses that are actively constituting social and ethical realities. Moreover, these technologies do not necessarily act independently, but are associated with specific forms of domination, control, and power. In this section, I outline each component of Foucault's framework. Technologies of production. Foucault (1988) defines technologies of production as discourses that "permit us to produce, transform, or manipulate things" (p. 18). Technologies of production are situated within the rules and norms that govern how discourses are produced and reproduced. For example, technologies of production are similar to the social norms and legal rules governing what types of personal or medical information can be shared by health providers about their patients (Capurro, 2013). Technologies of production are innate in these instances of discourse surrounding privacy as they allow providers and patients to manipulate and manage privacy in specific ways. Technologies of sign systems. Foucault (1988) argues that technologies of sign systems are technologies that "permit us to use signs, meanings, symbols, or significations" (p.18). They create specific and general meanings to be used by the system and those that have dominance or power. These are systems and discursive structures that include and/or exclude populations from engaging in meaning. An example of technologies of sign systems is when providers use technical or jargon-laden language to both demonstrate expertise and exclude patients from full participation in decision-making (Baldwin, 2005). Technologies of power. Foucault (1988) contends that technologies of power are discourses that "determine the conduct of individuals and submit them to certain ends or 48 domination" (p.18). Thus, these discourse techniques influence and determine decisions about behavior within social systems. For example, a technique of normalization creates uniformity and consistency in power dynamics similar to health providers directing patient visits through medicalized scripts (Colicchia et al., 2016). These discourses can be used to reify, conform to, and even undermine existing power structures, systems, and relationships. Although a number of authors have discussed technologies of power in health care settings and relationships (e.g., Hutchinson & Jackson, 2015; LeBesco, 2011; Malatzky & Bourke, 2016), little research has been conducted on these technologies in relation to reproductive genetic testing. Technologies of the self. Finally, Foucault (1988) defines technologies of the self as technologies that "permit individuals to effect by their own means or with the help of others a certain number of operations on their own bodies and souls, thoughts, conduct, and way of being, so as to transform themselves in order to attain a certain state of happiness, purity, wisdom, perfection, or immortality" (p. 18). As Fischer et al. (2016) explain, technologies of the self consider how subjects constitute themselves in relation to power through various techniques such as self-actualization, truth seeking, and practical critique. An example of this set of technologies would be patients self-tracking health statistics such as exercise and dietary regimens (Sanders, 2017). Bringing the technologies together. Foucault's technologies can be used in conjunction to one another as a way of both dominating with and resisting power. The framework of technologies allows scholars to examine queer experiences that construct discourses about power and knowledge. Experiences of LGBTQ individuals and couples as they communicate with their providers about reproductive genetic testing can be 49 analyzed using this framework to inform our understanding of discourses of dominance and resistance within this communicative context. Reproductive and Queer Futurism Although Foucault's framework of technologies provide insight into the relational discourses formed through the queer patient - health care provider experience, Edelman's (2004) concept of reproductive futurism may be helpful in understanding LGBTQ patients' interactions with reproductive genetic testing. White (2016) succinctly defines "reproductive futurism" as "the future-oriented, heteronormative social order" (p. 963). Although White's definition is descriptive of reproductive futurism, Edelman (2004) uses the term as a way of describing "the organizing principle of communal relations" (p. 2), which is cishet (cisgender, heterosexual) civil society's desires of the future that are directed into the figure of what Edelman describes as the Child. The Child is a metaphor for the future, but also a symbol that imbues people and practices with value and meaning for contributing to the Child's existence (White, 2016). Edelman (2004) argues that the Child also requires an "other" to produce and reproduce the social order of communal relations. That "other" is represented by queer bodies that are abjected to the periphery through marginalization and heteronormativity. Queerness is demonized as the end of the future or "the negativity opposed to every form of social viability" (Edelman, 2004, p. 9). Edelman (2004) argues that the presumption for reproduction is at odds with a future that includes queer bodies. Moreover, the Child is positioned in conflict with the nonproductivity of queerness and the jouissance (or immediate pleasure) that is possible without children. Edelman (2004) famously claims that queers should reject any 50 imperative to reproduce and to "Fuck the social order and the Child in whose name we're collectively terrorized" (p. 29). Thus, the antisocial nature of reproductive futurism is that the Child represents and functions across much of queer theory as the various forms of normative discourses, and thus should be rejected. Edelman's argument has been taken up by other queer scholars who are also skeptical of reproductive futurity or futurism. Halberstam (2011) argues that reproductive futurism should be rejected as an acceptance of failure, while Booth (2010) contends that reproductive futurism has resulted in a neoimperialist set of policies regarding HIV/AIDS medication to prevent HIV-transmission from African mother to child. These works speak to a growing body of queer literature that is hesitant to place a priority on child-bearing. In fact, Halberstam (2005a) proffers that a resistance to reproductive futurity is one that also acknowledges an alternative to normative procreation and reproduction. She asserts that a queer alternative modality is the "potentiality of a life unscripted by the conventions of family" (Halberstam, 2005a, p. 2). Halberstam (2008) posits that "the queer subject stands between heterosexual optimism and its realization" (p. 141). The queer subject indicates that in rejecting reproductive futurism, one might also reject the normative and destructive associations of heteronormativity. Otherwise, Edelman (2004) argues, that while reproductive futurity continues to exist, heteronormativity will continue to propagate. Even though Edelman's position on reproductive futurism has been taken up by scholars, critics to his perspective do exist. Lewin (2009) notes that Edelman's framework is fairly nihilistic and comes at a substantive cost for those LGBTQ individuals and couples desiring to have children. For example, Lewin (2009) suggests 51 that if jouissance is an important concept to rejecting reproductive futurity, then rejecting one's pleasure to have children should also be rejected. Giffney (2008) contends that Edelman's argument is apocalyptic in the sense that the logical conclusion to rejecting reproductive futurism is simply to not have children. As Giffney (2008) explains, no children mean no humans and thus tantamount to an apocalypse. Lewin (2009) follows up this critique with a note that divorcing theory from practice may be a distraction from the politics of marginalization. As a way of bridging the gap between a complete rejection of reproductive futurism and the utopian idealism of some queer scholarship, scholars such as Muñoz (2009) as well as Binnie and Klesse (2013) have conceptualized queer futurism, which positions reproduction as a possibility for LGBTQ individuals and couples. Muñoz (2009) offers that queer futurity is one that conceptualizes a queer child as a center point for reproduction. Muñoz (2009) explains, "the future is queerness's domain. Queerness is a structuring and educated mode of desiring that allows us to see and feel beyond the quagmire of the present" (p. 1). Although Edelman marks the Child as heteronormative political conservativism, Muñoz suggests that with a queer child, a queer future is not only possible, but a necessary component to an open and collective societal effort beyond the temporal politics of the present. Binnie and Klesse (2013) note, in their study of LGBTQ activism in Poland, that participants saw their future as one dictated and informed by activism. The queer child was one educated and raised with queer art, LGBTQ activism, and was centered as a symbol of transformation. To Binnie and Klesse (2013) queer futurity is a permutation of radicalization (activism) and normalization (being integrated to "fit in.") 52 I argue that both perspectives (reproductive futurism and queer futurism) are necessary to understand how LGBTQ experiences concerning reproductive genetic testing are constructed in relation to domination and resistance of power. Reproductive futurism is useful as a critique to potential perspectives that privilege a desire to have children as a consideration of fulfilling a heteronormative desire to fit into society. Queer futurism is valuable in assessing the communicative possibilities and strategies of a queer future through the biological reproduction of children. Both argumentative frameworks provide a counter-balancing assessment of the sociomaterial experiences of sex and gender minorities. Research Questions and Conclusion Because health care decisions for LGBTQ individuals and couples are in a tenuous position concerning general health as well as reproductive health disparities, a thorough examination of the queer patient experience is essential. Reproductive genetic tests are used to determine genetic markers that associate risk for specific ailments such as various forms of cancer (Nelson et al., 2001; Peter, 2015), Huntington's disease (Myers, 2004), Down syndrome (Kellogg, Slattery, Hudgins, & Ormond, 2014; Schendel et al., 2015), and spinal muscular atrophy (Rudnik- Schöneborn et al., 2015). Because the outcome of these tests can result in specific forms of preventative treatment or in some cases termination of pregnancy (Peter, 2015), how providers communicate with patients about these screening tests is critical to decision-making outcomes for patients and for training policies for providers (Agénor et al., 2015). It is important to note that communication research regarding the discussion of these tests between patient and provider is extremely limited. Research has primarily 53 been on risk communication about particular indications of negative tests results. For example, Edwards, Evans, Hood, and Elwyn (2006) explain that providers personalizing communication can help individuals making the decision to take a genetic screening test. Additionally, Henneman et al. (2002) focus on whether couples consider getting a carrier screening test understand what the test is and what the results mean for the couple. These research projects are good starting points, but rely solely on heterosexual experiences to inform their decision. It is for these reasons that I offer the following Research Questions: • RQ 1. How do participants experience the communicative constitution of reproduction and reproductive genetic testing? • RQ 2. How do participants engage in health knowledge production and communicative decision-making in regards to reproductive genetic testing and reproduction? • RQ 3. How do participants' narratives reveal power dominance and resistance in the discourses of reproduction and reproductive genetic testing? • RQ 4. What nondominant discourses are revealed in participant narratives concerning reproduction and reproductive genetic testing? As discussions of genetic testing become more of a factor in our health care experience, the ways we communicate about them with our medical providers and counselors is critical to understanding the tests and results. Moreover, by realizing the ever-present reality of health disparities, researchers can be informed that the experiences of queer individuals and marginalized groups are in part different than nonminority populations. Using the communicative constitution of health and queer standpoint theory 54 as lenses, this study will improve the understanding of the lived experiences of LGBTQ individuals and couples as they interact with prenatal genetic tests. CHAPTER 3 METHOD I peer through a fractured window. Pad and pencil in hand, I squint through the cracked glass. When I step to the side or even slightly move my head, I see something different - a smirk here, a wink of an eye there. At the same time, the glass provides a reflection of me trying to observe what is beyond. - Sarah J. Tracy, Qualitative Research Methods: Collecting Evidence, Crafting Analysis, Communicating Impact As a critical qualitative scholar, I am particularly interested in the lived experiences of those who are marginalized and/or pushed to the periphery of society. For this study, I use qualitative inquiry to understand the communicative constitution of health in the context of sex and gender minority patients' experiences with reproduction and reproductive genetic testing. Studies using qualitative methods involve three parts: reflexivity, data collection, and data analysis. Qualitative inquiry is suitable for this study because understanding the lived experiences of others in relation to an understudied phenomenon (such as communication regarding reproductive genetic testing) allows the researcher to develop theoretical and practical concepts. This relationship between lived experience and theoretical application is particularly important in this investigation because the population being studied has not yet had a chance to tell their story. Unlike quantitative or some rhetorical methods, a qualitative approach assumes that the telling of experiences is critical to being able to understand the nuance of the phenomenon (Lindlof & Taylor, 2002). While other methods might claim access to lived experiences, I argue that qualitative methods allow the participant 56 to tell their story without the increasing impediments found in other methods. Further, qualitative methods are consistent with queer standpoint theory, which is being used as a guiding perspective for this research project. As queer standpoint theory seeks to forward the experiences and stories of LGBTQ-identifying individuals, qualitative inquiry is suitable for collecting, coding, and analyzing data. In this chapter, I engage elements of qualitative study by discussing my positionality, describing the decisions made in collecting data, as well as summarizing the steps I took to analyze data. Reflexivity Reflexivity is the process in which scholars develop a sense of not only their identity and experiences, but how those markers and experiences might impact their collection of data and their interpretation of that data (Berger, 2015; Lindlof & Taylor, 2002; Tracy, 2013). Reflexivity is a necessary condition to qualitative inquiry in which scholars outline their basic assumptions about the contextualized research area and their experiences that may implicate the way the research is conducted (Berger, 2015; Tracy, 2013). Qualitative scholars (even in variations of the method) have largely incorporated their reflective self in their qualitative studies (see Ellis, 2004; Garcia, Standlee, Bechoff, & Cui, 2009; Middleton, Hess, Endres, & Senda-Cook, 2015). Reflexivity is not only necessary to create parameters of experience for researchers (Lindlof & Taylor, 2002), but is instrumental in informing the audience of what biases exist in the research (Berger, 2015; Tracy, 2013). While quantitative or other social-scientific approaches may attempt to remove bias, the qualitative researcher acknowledges that bias will always already be present in the decision-making of the 57 research design, the development of the analysis, and even the questions being asked in the research project (Ellis, 2004; Lindlof & Taylor, 2002; Tracy, 2013). Researchers and research design are value-laden; imbued in one's method are integral values and assumptions based on identity and experience of the researcher and design process (Tracy, 2013). I say this to underscore the necessary condition of alerting an audience to the biases integrated in and impacting the research being conducted. Thus, using Tracy's (2013) audit for examining reflexivity, I offer my own positional story: As a late 30s, white, gay, male, I have thought quite a lot about my selfidentity and the characteristics and considerations that mark my body as well as performances. I recognize that my lower class upbringing sometimes clashes with my pursuit of higher education and critical thinking. My father was a machinist and my mom struggled to find ways to pay the bills. I was expected to go into the family business and to perhaps become a racecar driver like my cousins and uncles. Instead, I pursued academia and the life of coaching collegiate debate. When I first disclosed my sexual orientation, I feared how my Midwestern, Southern Baptist family would react. The expectation from my family was that, as the oldest-born son, I would have children to carry on the family name. I have played and replayed moments from when I was a teenager, where my mom and dad encouraged me to have children. My mom's major concern, when I told her that I was gay, centered on whether I would have a child. The concern was not lost on me as I have fantasized about having children and getting to be a father. Watching my siblings have kids has made the choice to reproduce both urgent and a careful consideration. With a long-term partner, we had discussed at length how we might navigate reproduction and what we might do if our child was diagnosed with a disability. As a queer academic that studies health and organizational communication of marginalized communities, I have felt the withering sting of hateful glances of health providers and the uncertainty of disclosing my sexual orientation. I have seen how a physician has dramatically changed their communication, mostly in negative ways, after disclosing my sexual orientation. I am mindful of the hurt and distrust that can come from disclosing precarious identity in front of people that not only hold authority, but also a patient's medical wellness. 58 It is that very reason that I am careful to outline and bracket my positionality to be reflexive of myself as I study this important phenomenon. Being self-reflexive is not a one-time occurrence, but rather an ongoing process of selfawareness and interrogation of one's assumptions (Ellis, 2004; Lindlof & Taylor, 2002; Tracy, 2013). To enhance my qualitative research methods and analysis, I kept a journal through the various stages of participant recruitment, data collection, data analysis, and writing. For example, I journaled thoughts about hardships I was having with recruitment, the lack of data centering on organizations and systems, successes in connecting literature to codes, and issues concerning the study's research questions. Journaling thoughts about a project, changes in the researcher's identity or circumstances, as well as acknowledging the potentially changing relationship to participants has been helpful for researchers to continue to be self-reflexive throughout the research endeavor (Malacrida, 2007). In particular, my positionality may have influenced how I gained access to participants and drew out thick description. Archer (2002) noted that participants may be more likely to share information when the researcher discloses personal information that creates similarities to that participant. My identity as a gay man may have afforded me access to data from participants that other researchers might not have. Participant Recruitment Eligibility for participation in this study required meeting three criteria: (a) participants must identify as lesbian, gay, bisexual, transgender, and/or queer, (b) participants must have had a conversation with a health provider about reproductive genetic testing, and (c) participants must be at least 18 years of age. Participants were 59 recruited in four waves of purposive sampling which allowed time for interview data to be coded, questions to be added or revised as part of the interview guide, as well as consulting of extant literature. The first wave utilized a Facebook advertising campaign that resulted in five participants, but was ultimately ineffective after the initial recruiting period. Ads and a project page were created using Internal Review Board approved language and stock photos provided by Facebook. Prospective participants were asked to visit a University hosted webpage detailing specifics about the project and contact information for the researcher. Interested participants were provided with information to contact the researcher to schedule an interview, collect demographic information, and determine participant eligibility. Although using Facebook was a novel way of reaching out to potential participants, recruitment was slow and there were a lot of interested participants who did not meet eligibility requirements. The final three waves employed ResearchMatch, which is a website that pairs volunteers and researchers together based on desire to participate in a project. ResearchMatch allows the researcher to contact participants based on specific demographic parameters and to contact up to 1500 volunteers at one time. Although ResearchMatch allowed for a wide number of participants to be contacted at once, very few were eligible in each search for this study due to the inability to limit participants based on the study's criteria. For example, the site does not allow researchers to search for participants that identify as LGBTQ because the site does not ask for that demographic information. This required contacting nearly 80,000 potential participants to add an additional 19 participants to the study. The procedure for recruiting from 60 ResearchMatch began by doing a search for participant volunteers using an IRBapproved call for participants that was emailed to participants through the site. Participants that determined that they met the study's participant criteria and wanted to know more about the study clicked on a button in their email "Yes, I'm interested." Those participants were populated with their demographic information into an Excel spreadsheet and then contacted via email by the researcher to set up an interview time. Finally, three participants were recruited through network sampling. Network sampling is a form of data collection that relies on the researcher's network to gather participants (Bernard, Wutich, & Ryan, 2016). Network sampling was appropriate due to the hard to reach nature and specificity of the participant population (Atkinson & Flint, 2001, King, O'Rourke, & DeLongis, 2014). Additionally, network sampling is an effective way of using existing participant networks to add more voices to a qualitative study (Atkinson & Flint, 2001). Regardless of how participants were recruited (by Facebook, network sampling, or ResearchMatch), a day before the participant's interview they were emailed a reminder about their interview time, a copy of the study's informed consent document, and a link to a Qualtrics demographic questionnaire. Participants were asked to read the consent document carefully and fill out the demographic questionnaire prior to the interview. Participant Demographics Twenty-seven participants were interviewed for this project. Nineteen participants were interviewed individually and eight participants were interviewed in coupled pairs. As participants were recruited from all over the United States, multiple 61 geographic regions were represented in the data. Six participants lived in the South, six lived in the Midwest, four lived in the East, four lived in the West, three lived in the Northeast, two lived in the Mountain West, and two lived in the Northwest. Participant demographics for race were a majority white (n = 18), while five identified as Hispanic/Latinx/Latina/Latino, three self-identified as Black, and one individual identified as Middle Eastern. The average age of participants was 34.4 years of age, with a range of 26 - 55 years of age. The participant population was well educated with 12 individuals indicating they had received their Bachelor's degree, nine had obtained their Master's degree, and four had earned a doctoral or juris doctorate degree. One person had achieved an Associate's degree and another had only finished high school. In terms of gender identity, 17 participants identified as female, nine participants self-identified as male, and one participant did not want to identify as a gender. Recognizing the fluidity of sexuality, participants were given the option to identify as multiple sexual identities resulting in a number of cross-identifications. For example, one participant identified as gay, lesbian, and queer, while another identified as bisexual and lesbian. Eleven participants identified as bisexual, ten identified as queer, seven identified as lesbian, six identified as gay, and three identified as trans. For a full reference of participants and their demographics, see Appendix B. Qualitative Interviews Although participants were given the option of a face-to-face interview (if they were geographically close to the researcher), all interviews took place and were recorded over Skype. While face-to-face interviewing is preferable for rapport and nonverbal cues (Tracy, 2013), Skype, as a medium, has become a cost-effective way to 62 gather interview data from participants who are geographically dispersed (Hanna, 2012). Sullivan (2012) notes that the cost of technology and need for technical knowhow can be potential barriers for participants to overcome, but these issues were not present in this study. Sullivan (2012) also explains that Skype is incredibly effective for reaching a population that is geographically broader than the researcher's own geographic area. As such, participants were recruited from all over the United States for this project. Once the researcher and the participant(s) connected on Skype, participants were asked if they had received and read the informed consent document. Participants were then asked, "What questions do you have about either the document or the study?" Once questions were answered, then participant consent was obtained through vocal or written confirmation of their willingness to take part in the study. The University IRB granted a request for a waiver in signing the informed consent document to protect participants from unnecessary transmissions of their identity in participating in this research project. Interviews were recorded using free recording software and were professionally transcribed. Interviews were conducted either with an individual participant or with both partners using a semistructured interview guide (see Appendix E). Questions were constructed both topically and narratively to provide an opportunity for participants to recall their experience, elaborate on answers, and clarify information provided (Lindlof & Taylor, 2002). Additional follow-up and probing questions were asked to generate more detail, examples, and descriptions of their experience. For example, one couple offhandedly mentioned being part of a Facebook group with other parents that had also 63 used their sperm donor's DNA. Although not part of the interview guide, probing questions allowed for more specificity in participant description about their concern for genetic complications and having an unknown donor. Interviews were semi-informal and conversational, which allowed participants and the researcher to play off one another to spur on additional detail or questions (Lindlof & Taylor, 2002; Tracy, 2013). Topics that were discussed included participant experiences with the health care system, experiences and communication regarding reproduction, experiences communicating with their provider about reproductive genetic testing, as well as experiences undergoing genetic testing. A funneling approach was used to ask questions about general health provider experiences and narrow to reproductive genetic testing (Morgan & Hoffman, 2018; Tracy, 2013). Participants were given an opportunity to add to answers, talk about other relevant experiences that we may not have covered, and/or pose their own questions about the study. Furthermore, participants were asked if the researcher could follow up with additional questions and share data with them to engage in member checking. Although all participants responded positively to wanting to see their transcript and be offered the opportunity to revise their responses, only one participant submitted a change that simply omitted information they felt could potentially identify them as a participant. Finally, participants were offered a $25.00 gift card to a national chain retailor that was sent to them by email or through regular mail depending on the preference as a thank you for their participation. Interview recordings were kept on a password protected computer and were professionally transcribed. Transcribed data were checked for accuracy and blinded to 64 remove identifying features of the participants. Participants were randomly assigned pseudonyms and a tracking number that were used on the recordings and transcripts in a two-factor authentication password-encrypted file. Names of participants were kept separate from transcripts, recordings, and other data (including researcher notes taken during the interviews). Interviews ranged from 26 minutes to 119 minutes in length with the average interview lasting 53 minutes (the 119 minute interview was done via Skype messenger as the participant was deaf and wanted to communicate through real time writing as an accommodation for their disability). Data Analysis Analysis of interview data occurred in four phases: (a) familiarization of data, (b) open line-by-line coding, (c) creation of a codebook, and (d) member and peerchecking. Even though data analysis and data collection are presented separately, collection and analysis of data were concurrent operations to ensure data saturation. Each blinded transcript was uploaded to Dedoose for data analysis. Dedoose has been used effectively to organize data, code data efficiently, and provide a singular space for collecting all documents (Miles, Huberman, & Saldana, 2013). It is important to note that the software does not analyze the data, but rather is used by the researcher to aid in organizing their analysis. After inputting documents into Dedoose, each file was closely read by the researcher to increase familiarity with each text and to begin thinking about potentially relevant descriptive codes. The second stage of analysis involved open line-by-line coding of data. These codes started off descriptive in nature, where a code might be simple characteristic of a textual reference. Tracy (2013) labels these as first-level or in vivo codes. As coding 65 continued, refinement of codes leads to what Tracy (2013) describes as analytical codes. These codes are connected to theory and go beyond a simple explanation of what is said or being communicated. Narrowing and categorizing codes allowed me to concentrate data for more thorough analysis. During coding, I referred to the research questions being asked and engaged in Glaser and Strauss's (1967) constant comparative approach using queer theory, Foucault's framework of technologies, reproductive futurism, and queer standpoint theory as lenses for my analysis. Standpoint theory and queer theory began as sensitizing concepts, and as new themes/codes emerged then other theories/constructs such as queer standpoint theory, framework of technologies, and reproductive futurism were considered. To keep a written record of important thoughts concerning the project, analytical memos were written as interactions and themes between the data emerged (Charmaz, 2014). To ensure rigor and trustworthiness of the analysis, I created a codebook that outlined descriptions for each code as well as examples to provide consistency in coding (Charmaz, 2014). As Dedoose has the capability of both organizing and creating code definitions/exemplars, the software was used to establish a portable electronic codebook (Miles, Huberman, & Saldana, 2013; Zamawe, 2015). While codes should be stable and intuitive (Lindlof & Taylor, 2002; Tracy, 2013; Van Maanen, 2011), I was not looking for reliability as the coding was completed solely by the researcher. To help ensure rigor, I engaged in peer-checking with colleagues during analysis to ensure that theoretical constructs were not missed and to help establish additional potential themes (Spall, 1998). Memos and analysis were member-checked and peer-checked during the coding process. By following up with participants and 66 providing them with writings concerning my thoughts, member-checking sought to make sure that the researcher's analysis rang true with participants (Lindlof & Taylor, 2002). Specifically, participants were given the opportunity to look over their blinded transcript and clarify thoughts or add additional information. Moreover, participants were provided a lay summary of the coding and analysis. Participants were then asked if the analysis did or did not ring true with their experience and why. They were also afforded the opportunity to add more information or thoughts. Themes Data analysis produced 209 codes and 1086 excerpts. Excerpts were sometimes coded for multiple ideas, which led to 1642 code applications. These constitutive codes were organized into eight major themes (see Appendix C for codes and themes). Five themes were primarily descriptive that were analyzed using the communicative constitution of health, including the communicative constitution of reproduction, the communicative constitution of reproductive genetic testing, patient-provider communication, health knowledge production, and health decision-making. The three other themes were more theoretically oriented, which used queer standpoint theory as its starting point for analysis. These themes included Foucault's framework of technologies, resistance/freedom, and sociomateriality. Occasionally, codes from one theme interacted with other themes. For example, the subtheme concerning material costs of reproductive genetic testing and assisted reproductive technologies constituted health situations of participants as well as created a technology of production. As such, in Chapters 4 and 5, subthemes will be presented in multiple places. 67 Summary This chapter described choices and justifications of the study's method. The use of qualitative inquiry to examine the phenomenon of sex and gender minority patientprovider communication regarding reproductive genetic testing is not only appropriate, but necessary to understand the lived realities of LGBTQ individuals and couples attempting to engage in a sometimes tumultuous experience of reproduction. In Chapter 4, I address Research Questions 1 and 2 to describe the narrative themes of the data. As such, I tease out how participants experience the communicative constitution of reproduction and reproductive genetic testing, as well as how they participate in health knowledge production and decision-making. In Chapter 5, I address Research Questions 3 and 4 by first utilizing Foucault's framework of technologies to examine how power dominance and resistance is revealed in the discourses of reproduction and reproductive genetic testing for sex and gender minorities. Further, in Chapter 5, I investigate the nondominant discourses of reproduction, reproductive futurity, and queer futurism in participant narratives. Finally, in Chapter 6, I discuss the theoretical, methodological, practical, and clinical implications stemming from this analysis. CHAPTER 4 COMMUNICATIVE CONSTITUTION OF REPRODUCTION AND REPRODUCTIVE GENETIC TESTING Haven't we come a long way toward acceptance and adequately address the negative stereotypes? Indeed considerable progess has been made, but a substantial segment of the population continues to hold negative attitudes about LGBTQ people…When those people are healthcare professionals, the results can be poor quality of care, inappropriate care, or even refusal of care, and whether the violence is subtle or blatant, LGBTQ people suffer. - Michele J. Eliason and Peggy L. Chinn, LGBTQ Cultures: What Health Care Professionals Need to Know About Sexual and Gender Diversity The experience of living in a body of difference carries an assortment of challenges. In the case of biological reproduction, the activity of producing a child requires extraordinary means for LGBTQ individuals and couples, which can be socially and financially costly. The ways that sex and gender minorities experience reproduction and reproductive genetic testing is fraught with tension. Data in this study demonstrate that experiences of reproduction and reproductive genetic testing are bounded and navigated through communication individual behaviors, interactions with their provider, and interplay with the health care system. This chapter investigates the narrative themes of the qualitative interview data to explore how LGBTQ individuals and couples negotiate both reproduction and reproductive genetic testing. Thus, to explore narrative themes, the following research questions are addressed in this chapter: • RQ 1. How do participants experience the communicative constitution of 69 reproduction and reproductive genetic testing? • RQ 2. How do participants engage in health knowledge production and communicative decision-making in regards to reproductive genetic testing and reproduction? To answer these questions, this chapter begins by examining how LGBTQ individuals and couples communicatively constitute reproduction. Second, I detail the communicative constitution of reproductive genetic testing experiences for sex and gender minorities. Next, the chapter examines the theme of decisions and decisionmaking concerning reproductive genetic test results. Finally, I explore the production of health knowledge in relation to reproductive genetic testing for the study's participants. Communicative Constitution of Reproduction The experience of reproduction is exciting, intense, and concerning as LGBTQ individuals and couples must actively pursue biological reproduction in ways that most heterosexual couples would not. As Cameron notes, My thought process is I'm getting older, I have less time to do it and just passing on your DNA isn't enough if you're not around to raise the kid, right. Like you raise the best representation of, like, or a better representation of your values or at least, like, motivations or a part-- You know, you need to be around, so it's a pressing weight of like time is ticking by… In communicatively constituting reproductive care, participants are creating an intersection between the biological/material and the social construction of identity. These points of intersection are illustrated by the sociomaterial realities of experience and behavior that demonstrate how social conditions of identity intersect with material biological circumstances, technologies, and capital. To better explain the narrative themes that describe the communicative constitution of reproduction, I discuss participant 70 narratives of sex and gender minority identity in reproductive care (including heteronormativity, marginalization, and support), the biological drive for these participants to reproduce, the processes they are using or considering to have a biological child, and then material costs of these processes that are substantially impacting their experience. Sex and Gender Minority Identity in Reproductive Care Sexual orientation, sexual identity, and gender identity are difficult issues of LGBTQ experiences to navigate in health care. Alegria (2011) argues that LGBTQ, and in particular trans-individuals, must navigate social, psychological, and biological realities in their relationship in and with the health care system. Because health disparities are present for many LGBTQ patients, these individuals have become nervous when it comes to interactions with medical providers. Several participants noted their negative interactions with providers due to perceived heteronormativity, marginalization, and/or homophobia. Many participants in this study had felt marginalized by health care providers based on their identity or sexual orientation due to intolerance, a lack of cultural competency, and an absence of knowledge by the provider of sex and gender minority issues. For example, Emma, a transwoman, notes the intolerance she faced during a visit to a provider's office, I already knew something kind of weird was going on because the nurse that gave me the template to fill out, the little tablet, while I was filling it out, I kept getting really weird glances from the nurses. Clearly, they were uncomfortable with me being there at all. I was like, "this feels really awkward." Traditionally, you always fill out a preferred versus legal name sheet when you go to these kind of places, and I'd filled that paperwork out and everything. When they called me in for my examination, the nurse dead named me, which was extremely, extremely 71 uncomfortable. I was just not there for it. It made me feel very, very unsafe to be there. I ended up leaving the appointment entirely. I paid for it. I just didn't go. The intolerance of using a "dead name," or the legally given name at birth for a transindividual (especially at a place that deals with medical issues), is anxiety provoking for these individuals as it ignores the identity and can "out" these individuals to other patients (Peate, 2016). Intolerance was also expressed nonverbally as Rose explains, I mean it was just very cold and awkward and, "Oh, okay, let's get this over with as quickly as possible" sort of a thing. I don't know if it was that they didn't know how to react or that it was so far outside of their comfort zone that they were able to react appropriately. I don't know if I'm the first person that has ever been like, "Well, I'm honestly trying to sleep with women." Awkward medical interactions are a hallmark to health disparities for sex and gender minorities that have an impact on how LGBTQ individuals navigate their identity in health care encounters. Other participants have experienced what scholars, such as Dutta (2008) and Betancourt, Green, Carrillo, and Owusu Ananeh-Firempong (2016), have noted as a lack of health cultural competency in LGBTQ health care. Provider cultural competence is defined by Betancourt et al. (2016) as: understanding the importance of social and cultural influences on patients' health beliefs and behaviors; considering how these factors interact at multiple levels of the health care delivery system (e.g., at the level of structural processes of care or clinical decision-making); and, finally, devising interventions that take these issues into account to assure quality health care delivery to diverse patient populations. (p. 297) The lack of social and cultural understanding of patient identity by providers was clearly present for participants. Sara explains the disconnect she felt from the fertility clinic to recognizing her LGBTQ status and interaction with her partner's pregnancy, I was surprised when we went to the fertility clinic by having to do a lot of the background stuff. I had to do all the blood tests and stuff like that. I was telling 72 them, "I'm not the biological anything here, and I still have to do all the blood work and all of that stuff." I was taken aback by that. I didn't expect that. Like Sara, Helen, a queer woman, also has had negative experiences related to reproductive care and the facing a disconnect from providers: When being asked about information regarding my sex life, they will still ask about any potential pregnancies. Sometimes it gets annoying, because I have to remind them that my partner is trans and it's unlikely that I would need birth control. Amy explains an additional instance, where a provider forgot about the identities of their lesbian patients. But then, the other thing that was kind of hilarious was my wife went a couple of weeks overdue and she was really hoping to avoid an induction, which she did. But at one point, our OB was like listing off the things that we could try to do to bring on labor and she was like, "Obviously, you can't have sex," and we were like, "What?" We realized that what she meant was, you know, you don't have a penis that can inject prostaglandins into your wife's cervix, which is true. But like frigin' hell, like the way to put it is just hilarious. These disconnects indicate that there is still work to be done in improving cultural competency for providers. In addition to a deficiency in cultural competency, some providers were seen as inept by participants due to a lack of knowledge concerning LGBTQ health issues. Kris, a transman, explains an instance of when his provider misdiagnosed his cancer as an issue with testosterone. There have been a lot of situations unfortunately. The big one is getting those really abnormal blood tests and having him say "It's just 'cause you're trans," but it happened I've had the type of cancer where I have really thick blood, and so it's led to heart problems, and I was having some real significant problems, and he said "You know, it's probably related to your hormones. You should go talk to the doctor who prescribed you hormones." Why would my heart be related to that? That just doesn't even make any sense, but when an echo comes back abnormal that's his response, is that "You just need to go and see-- I'm not going to refer you to a cardiologist. I'm going to refer you to the doctor that prescribed your T." 73 Cameron had an encounter lacking cultural competency, when his provider did not understand about multisite testing for sexually transmitted infections. So went in for an STD test with the provider, my doctor at the medical center. And he didn't realize or didn't even think of getting tested at multiple infection sites for gonorrhea if you're a gay male. It didn't even cross his mind. He didn't think of it before. And when I knew to ask for that and he was unsure why, I mean, that gave me a little-- a lack of faith in his ability to provide, you know, or at least have the requisite medical knowledge to give me the appropriate care. Although some providers did not know what to test for, other providers have taken an approach that overly "otherizes" patients due to their sexual orientation or gender identity. Chase notes his frustration about additional unrelated mental health and sexual infection testing due to his sexual orientation. I'm like "Okay. I don't see how that relates," but it felt like a lot of incompetency, and me being new to the whole thing I didn't really know how to make heads or tails of it, so I try not to read into a lot of it, but now just looking back on it I see a lot of incompetency, a lot of frustration, a lot of anxiety about the whole thing. These gaps in provider knowledge about sex and gender minority identity as tied to their medical care have real health and financial effects on patients' lives. Sociomaterial Interactions in Reproduction As social identity for participants situates itself in relation to heteronormativity and a lack of cultural competency, participant identity also communicatively constitutes reproduction through sociomaterial interactions. Four narrative subthemes of materiality and sociomateriality emerged through analysis: biological drive to reproduce, choice and capability to carry pregnancy/provide genetic material, use of assisted reproductive technologies, and financial costs of reproduction. Initially, many participants talked about wanting to engage in reproduction due to a biological need or want to reproduce. Julie explains, 74 I always wanted to experience pregnancy and childbirth, so I don't know how much is that is born from just wanting an experience or thinking my genetic material is so fantastic I have to pass it along. … I just always wanted to experience both those things. Cameron concurs, "I think it's like the biological imperative and there's just something about raising a child with your own genetic code and passing that down. I mean, it's like the ultimate legacy is our DNA." Diane suggests that the want to reproduce spans various romantic and sexual partnerships. I've always wanted kids, even when I had opposite-sex partners. We just want to raise a family. I think it's a wonderful thing, and it's going to be hard, but it's also going to be very fulfilling, and that's what we both always wanted. In addition to a biological need to reproduce, participants also described the ability to engage in biological choice in carrying a child through pregnancy and providing genetic material. Tiffany explains the capability of both her and her partner in carrying the pregnancy, which could become a choice depending on the outcome of a carrier screening test. But I hate to say this, it is slightly more convenient for me, because if mine had come back positive then she could have gone and had one done. And we would be…this is convenient. This is why we have two ovens." Sara notes that due to some fears of pregnancy, but still wanting to have a child, it was a benefit that her partner also had the option to carrying a child. Sara discloses, "I never wanted to go through pregnancy. I'm terrified of it, to be honest, totally terrified, and don't have high pain tolerance, but I wanted to have a child, so this worked out really well." Though carrying the pregnancy is a choice that affords some participants options in the act of reproduction, male participants noted that the decision of whose sperm would be used was also a choice. Cameron jokingly noted, "I mean, he originally wanted 75 us to just, like, put it both in a big pot and stir it together and just see, you know, what pops out." Kyle and Barry, gay partners, explain, Kyle: We had the ability to choose who would provide the DNA that others don't really get the choice to do. It meant a lot to us to be able to make decisions about what went into making [our child]. Barry: It's why we wanted to [do] genetic testing in the first place. We can determine better genetic matches to the egg donor. We already know who we are, but testing gave us a better shot of knowing who [our child] would be. Thus, for some participants, the biological intersected with their identity in a way that could be described as sociomaterial. A third subtheme to emerge was the use of assisted reproductive technologies (ART). Participants used or were considering a combination of ARTs including sperm banks, in vitro fertilization (IVF), intrauterine fertilization (IUI), and surrogacy. For example, Rose and Anna had to make decisions about where they would get their genetic material. Anna explains, We used a sperm bank. We tossed around the idea of using somebody that we knew, but that just gets really-it can. It has the potential to get really messy, so we felt a donor from a bank would be better legally. We specifically used a donor who is not anonymous. Amy also used a sperm bank in combination with a known donor to be able to manage costs more effectively. Amy explains, "I was kind of grateful that we had a known donor, because that way the genetic tests were covered by the sperm bank." Tiffany used IVF, which required more information to be shared due to hormone usage, clarifying "she kind of went over the whole process of like IVF and this is very common when you're taking all of these drugs." Kyle and Barry used a surrogate for their child which required IVF. Barry explains, We used a surrogate that we knew, a friend. She was great. We paid her a lump 76 sum and took care of medical expenses. She had to undergo in vitro and I was the sperm donor. We had considered trying IUI, but decided that we didn't want to use her eggs for legal reasons. These ARTs are material technologies that intersect with sexual identities, thus sociomateriality is communicatively constituted in how the technology is used both medically and legally. Material technological needs sometimes require other material financial costs. In the case of reproduction for sex and gender minorities, financial considerations are incredibly important and represents the final subtheme. For surrogacy, Cameron explains, Well, so, in costs, medical costs, you're going to have to front in some sort of form. You're going to have to pay for actually either a surrogacy agency to hook you up with not only, like, the embryo, right, but then the gestational surrogate. And then you're going to have to pay that gestational surrogate some money on top of if she's working, you know, loss of work, loss of income and various other benefits. I mean, that starts adding up really quickly. Costs for surrogacy, which represents the most expensive version of ART, can range from $165,000 to $240,000 (ConceiveAbilities, 2018). Helen, whose partner is trans and undergoing testosterone treatment, is considering ARTs for having their child. She notes, "…we'd have to go through artificial insemination or IVF or some kind of process and that takes a lot of money." Similarly, Megan was considering using a sperm bank, saying, "[My partner] and I were thinking about pregnancy. We're trying to find a time to make it work. But, sperm banks are hard to work [with] and really, really expensive." Kris also concurred that the high cost of ARTs is concerning. I've done a little bit of research, not a ton, but what limited stuff I've seen, you know, it looks like the cost is upward of $30,000; even upward of $50,000 sometimes, I think more often times I guess, which, you know, is your salary. That's a lot amount of money. 77 Participants are clear that the high cost of reproductive technologies is a substantial barrier to being able to participate in biological reproduction. The material costs explicitly intersect with participants' sexual identities as Tiffany notes, "Other than that, other than the expensive medical process…my only option is to find a dude. So, that's probably not appropriate." Clearly, participants felt a financial pressure to abandon their identity in order to meet their desire to have a child of their own. Communicative Constitution of Reproductive Genetic Testing As LGBTQ couples, such as Kyle and Barry, want to make sure their money is used well in having a biological child, participants are turning to reproductive genetic testing. In the process of speaking to their providers, partners, and families, participants communicatively constitute their reproductive genetic testing experience. In this section, I explicate the subthemes for how sex and gender minorities communicatively constitute reproductive genetic testing (RGT) focusing on (a) their reasons for seeking and considering out RGT, (b) the concerns participants have for this type of testing, (c) the processes (both technological and communicative) that are used in constituting RGT, and (d) the ways testing results are considered by participants. Reasons for Reproductive Genetic Testing First, LGBTQ participants possess a multitude of reasons for considering RGT that range from being provider or context driven to patient-inspired attentions. Context sometimes dictated a consideration of reproductive genetic testing that motivated providers to consult patients. For example, age was a factor for several participants that triggered a consultation regarding RGT. Kelly explains, 78 She just said, "Here are the reasons that you might want to do this," because I was 37 when I had Reed, so I was older. She was just hilarious. She was like, "We're not saying that you're old, we're just saying that your eggs are getting older." I mean I understood that they really do encourage, especially older mothers, to have that testing, but she didn't push me at all. Similarly, Julie and Sara relayed their RGT consultation. Sara: Well, and everyone, I mean as soon as you hit 35, suddenly, you're old as dirt. Julie: Oh, so geriatric. Sara: Yeah, and then, all of a sudden, people start talking to you like you're 105, and then you think, "Oh, my gosh, everything can go wrong, and I'm gonna deliver this alien baby because I'm old, so doing as much testing as possible is-I mean why not? They're gonna do it, and they're recommending it, so let's do all of it. Yeah, that's how I viewed it. Although age was a factor that initiated a conversation, family and personal medical concerns were also reasons for engaging in RGT. Chris noted that he and his partner both had sickle cell disease in their families, which triggered a discussion of RGT with his provider. He says, "Well, with my current partner, we had to talk about that because …she told me that she has sickle cell disease in her mother's family side, and I have that in my mother's family side, too." Megan added, "Yes, well I have had breast cancer in my family and I have cousins who had Down's [sic]. I wanted to see if that was something I had or could pass along." A third reason for considering RGT was to seek out more information. Megan succinctly explains, "We wanted to check all the items that might influence the pregnancy, which is why we were considering genetic testing." The benefits, for some participants, were that they could be provided information, but still maintain the ability to make choices and decisions. Amy notes, "And so I was glad that I didn't have to make these choices but I would still get the information. It was sort of nice to have the 79 information without the… choice being taken out of my hands." As I will talk about in some detail later in this chapter, the duality of choice and information was important in producing health knowledge. A final reason for these participants having conversations with their providers about RGT was to engage in preparation in terms of reproductive planning and the potential outcomes of having a child. Chase explains that testing was helpful in preparing against the unexpected. He says, Really, it's mostly just like learning…the possibilities, the percentages, the statistics on certain things, getting more concrete information especially from our background about certain diseases that we are unaware about that could obviously be a possibility or come into play later on. It's kind of like not wanting to be blindsided…you want to be prepared. You want to know what's going on and not have to make those very difficult decisions later on when you have to make a decision about when you can decide to abstain from a decision for a while. Helen added, "If depression could be passed on, then I would just have to take extraordinary measures such as practicing positive parenting, therapy, play therapy, having a supportive system set in place." For Anna, reproductive genetic testing was primarily for preparation. She explains, To me, it's all about bein' able to prepare for down the road. I know some people choose not to do it. Some people choose not to do it because they don't wanna know. They don't want the added stress. Some people choose not to do it because they're not gonna terminate the pregnancy anyways, why? I wanted to know so that we could prepare. Preparation is not a new reason for considering reproductive genetic testing (see Cho, McGowan, Metcalfe, & Sharp, 2013), but it is interesting that many participants are being proactive about their consideration of RGT. This is different than heterosexual couples in that Lavery et al. (2002) found that heterosexual couples are fairly reactive when it comes to considering forms of reproductive genetic testing such as 80 preimplantation genetic diagnosis. Concerns About Reproductive Genetic Testing Although participants did have significant reasons for considering reproductive genetic testing, they also expressed some substantial concerns about the technologies and process. These concerns ranged from a loss of privacy to stigma to potential miscarriage via amniocentesis to costs of the testing. First, Steven noted that the privacy issue was of a concern, but that it could be taken care of through various means. He explains, I mean, obviously, we would do it through a facility or some place that is fully clandestine. Maybe even do it through a private company, something like one of those specific things you send off for like a facility or something like that. While Kyle noted, "I didn't want my information getting out. When we first talked about I asked about what steps [the provider] took in making sure my tests and results would remain private." Concerns about privacy went hand in hand with potential stigma. Emma spoke about her testing for potential markers for schizophrenia. She explains, I was worried about having, beyond just a psychologist diagnosis, an actual medical test to terminalize diagnosis of one of the more stigmatized mental illnesses. That's one of the things I expressed to the doctor and was like, "I'm kind of worried because this could mean, moving forward, that anybody who ever sees my medical record will know from jump street what's going on." It's marked there permanently. He explained to me that just because the marker was there, it didn't really mean anything, and explained, if anything, it just means that there's a higher chance I'll get better help in the future. I think I understand where he was coming from. I don't think he necessarily understood how scared I was of some of the stigmatization that followed it. Although the Genetic Information Nondiscrimination Act of 2008 prohibits the use of genetic test results to discriminate against individuals (Hudson, Holohan, & Collins, 2008), the potential stigma that still exists is palatable especially in relation to the 81 potential to test for markers of queerness (i.e., the gay gene.) Emma continues, because it's a little bit scary for younger kids, for genetic screening of infants before they're born kind of stuff. That's what scares me is that there is a potential to canonize what genes do and don't-like the gay gene might really exist. Who knows? If they find it, that's something that was really scary to me. Other participants were substantially concerned with potential miscarriages from the testing procedure, specifically with the use of amniocentesis. Anna explains, "I didn't really wanna do amniotic fluid testing because there's a chance of miscarriage with that, so we decided we would get the blood work done." That sentiment was also expressed by Kelly. It tells you that there's a 1 in 400 chance that it will-the baby will go into spontaneous labor, or whatever the numbers were. I remember I had looked that stuff up. Like I said, I really just think it was mostly an aversion to the idea of the needle, if I didn't have to do it. If I had to do it, that would've been different. Since there was another option, I was willing to go with that first. Nancy also eschewed an amniocentesis saying, "I think the only concern that we had was whether or not there could be a miscarriage, but that seemed really low and only if we had to do an amnio." Julie also suggested the same concern about a miscarriage from an amniocentesis, I was reading about amniocentesis, which is at, I think, 20-something weeks. There's like a 1 in 1,000 chance that you'll miscarry, that the amnio will cause a spontaneous abortion, so I was very nervous about that. Then I think we might have brought that to the attention of the midwives, and they said, "Oh, there's this new thing," at least it was new at the time, "called NIPT. It's just a blood draw." Each of the participants that had considered prenatal genetic screening had serious concerns about undergoing amniocentesis. This is interesting as Akolekar, Beta, Picciarelli, Oglivie, and D'antonio (2015), in their well-cited meta-analysis, found only a .11% risk of miscarriage from undergoing an amniocentesis versus the risk of miscarriage in the greater pregnancy population. In many cases in this study, participants were 82 greatly overestimating their risk of miscarriage due to amniocentesis. It is clear that the discourses and narrative surrounding this particular procedure of testing communicatively constitutes a dimension of reproductive genetic testing. A final concern for participants in considering reproductive genetic testing was the cost of screening. Reproductive genetic testing can be very expensive. Helen was blunt in her assessment arguing, "That [the testing is] going to be expensive." Megan also mentions, "I mean we didn't really get a lot of information and the cost was pretty steep." As reproductive genetic screening can range for preimplantation genetic diagnosis anywhere from $2000 to $5000 or more for each individual diagnostic (Fertility Proregistry, 2018), costs can place RGT out of reach for some couples that do not have insurance that will cover the costs. For example, Pauline explains, they took the sample, but they have not run it yet, because it was denied by insurance, which I am trying to decide whether it makes sense to appeal or not, so that's where I am right now. And I could do it without insurance, but that's not something financially that I think makes sense right now. I think it's like 2,000 dollars or something. For other participants, the cost of testing was a concern, but worth the financial investment. Steven argues, I mean, there's a cost-benefit analysis with everything, of course. But I mean, I'm sure that my insurance may provide genetic counseling…I'd have to kind of look into that. So cost would be a factor, but not. I mean, you can't really put a price on knowing this type of information, you know what I mean? Diane concurs, "I don't think all insurance covers it, but I'm okay with that. I think it's worth it." The cost of reproductive testing is problematic as LGBTQ individuals are typically uninsured or underinsured (Anastas, 2013; Cray & Baker, 2012; Eckstrand & Ehrenfeld, 2016) and RGT is mostly paid for through insurance due to its high cost (Graf, Needham, Teed, & Brown, 2013). 83 Processes of Reproductive Genetic Testing The next subtheme representing the communicative constitution of reproductive genetic testing is the technological and discursive processes surrounding screening. Participants described reproductive screening in three parts: (a) the initiation of the RGT conversation with their provider, (b) the use of genetic testing technology, and (c) the discourses of risk concerning aspects of genetic screening. First, several participants reported that provider instigation of an RGT discussion was caused due to the age of the pregnant older woman (as previously indicated), to the timing of pregnancy, to checklists within sperm banks, or to calls for research. No participants were approached about reproductive genetic testing without one of those four reasons. Otherwise, patients reported triggering conversations with their provider for the reasons noted previously. Second, participants inquired about and utilized a variety of reproductive genetic testing technologies. For example, Kyle and Barry used preimplantation genetic diagnosis and carrier screening. Julie and Sara, as well as Anna and Rose, used prenatal genetic screening through noninvasive prenatal testing blood work. Amy's partner underwent an amniocentesis and went through carrier screening and included their donor via the sperm bank they used to collect and prepare the sperm sample. Interestingly, all but one couple or individual that conceived a biological child went through prenatal genetic screening, but all couples had conversations with their providers. Finally, as part of the process of reproductive genetic testing, participants and providers engaged in discourses of risk about the testing procedure and potential genetic disorders or markers. In regards to risks of testing procedures, many of the participants were obviously concerned about undergoing amniocentesis as discussed above. As such, 84 they spoke about the probabilities of the testing leading to miscarriage. Other risk conversations about the testing were related to the effectiveness of the tests. Emma explains, "They explained the test can be wrong, false positives, false negatives." Other participants participated in similar discourses where the possibility of false test result reserved the potential for additional and more aggressive future testing. Heather expresses this sentiment, "if the initial blood work had come back showing a possibility of something, I would have been concerned about the more invasive testing, like amniocentesis or something where they actually had to go in to the uterus or whatever." The risk of genetic disorders, not surprisingly, dominated conversations between providers and participants about reproductive genetic testing. Nearly all participants reported that their discussions included discourses of risk about the potential for certain genetic markers. For example, Cameron relayed what is often a typical discussion of risk concerning genetic disorders. I asked her the benefits of it, which she said to see if you're a carrier for certain-- I forget the term. I'm not a medical provider, but, like, for certain diseases or markers, for certain, you know, complications. And I asked her what the risks would be and it seemed self-evident, right, that you might detect your own potential to have some sort of complication in the future. Part of the discussion of risk for genetic disorders also included considerations that certainty was not a reality. Chase had an intense realization, explaining, For me, it was like-- being there was just like you hear about like, "Well, the possibility, the percentages, numbers, so on and so forth." It's just like a little bit of an overwhelming thing to hear where you're just like, okay. So you're saying that despite all of this information, despite everything that you're learning about, despite everything that we may find out, may not find out, it's still essentially inconclusive. It's still essentially not going to provide a definitive answer. It's still not going to basically help with any certain specific doubt about like is the child going to be all right? Are they going to suffer what I did, or what they did or my family did or their family did kind of thing. That just keeps going on and on and on and it just keeps like replaying, replaying and it's like when someone's 85 very vague and very noncommittal, very discouraging about it, it doesn't seem to ease any feelings about it. These discourses of risk are both clinical and personal. Although providers are attempting to convey that having a biological child comes with a lot of probability to consider, patients are processing that information either as a "yes/no" certainty or as an informational uncertainty. In terms of certainty from carrier screening, participants are making decisions about risk that they see as more absolute. Pauline expresses this risk processing by saying, I think that if I was positive for breast cancer in particular that it could cause added worry and I don't know if they are of the mind that they would want to know or not want to know. I'm definitely more on the would want to know camp, especially because if I knew that I had one of the BRCA genes, then I would not want to physically bear a child, like gestate life. Conversely, like Chase, other participants, such as Barry, also realized that the discussion of risk was about receiving information, but that information was still uncertain. Barry explains, I knew that we were talking about risks of [the child] having something even though we went through testing. It just felt less simple and that there were so many uncertainties even though we were going to do all this testing, you know? These discourses of risk illustrate the tension between the belief that tests should have absolute results/certainties and the reality of uncertainty that comes from most genetic endeavors. As participants encounter and discuss RGT, it is clear that they are co-creating their experience through the initiation of conversation, the use of technology, and the discourses of risk. 86 Sociomateriality of Test Results The final subtheme of how participants communicatively constitute reproductive genetic testing is focused on the sociomateriality of test results. Like most tests, the results of those tests tend to be of significant interest. Participants reported (a) results sparked emotional responses as they were waiting for/received test outcomes, (b) the (lack of) offering of counseling and resources after test results, (c) the perceived professionalism (or lack of) in having results returned, and (d) the technology used to mediate results. Emotions played a significant role for participants as they waited for results. Sara, for example, talks about the worry of there being a genetic disorder with her child, "I think definitely the worry. I was right there, especially with Down syndrome. That was a huge concern until we were able to eliminate that." Sara and Julie continue: Julie: With my age, Down syndrome was certainly a big concern. Even at 20 weeks, you get a scan, and you make sure he has two legs and two arms and all those things, but then, I don't know. I still thought, even until the second I saw him, maybe they're wrong and he's gonna have a third leg, and or maybe he won't have a face or something. Sara: Yeah, anxiety. Yeah. Similarly, Anna and Rose felt their own emotional rollercoaster: Anna: What if somethin' does come back? What then? There are kids with Down syndrome that go to normal schools and do great. Some of ‘em can even be slightly independent, and they're in there with some kids with Down syndrome that are mute and have terrible heart defects. Any sort of genetic anomaly has a spectrum, so you worry if there is somethin' wrong, or is it gonna be manageable, or is it gonna be this nightmare? Are we gonna get a divorce because we have this child that's so sick and the strain is so great? Are we gonna be able to survive it? You have all these what ifs. Rose: Anxiety spiraled. Anna: Yeah, anxiety spiraled. Sure. Yeah. 87 Fear and anxiety of a negative result was palpable for many participants. Tiffany explains, But it was like for that couple of weeks, and of course, it was like Fourth of July week time so it took longer than it should've. And so that whole time every time I saw a baby I'm like oh, crying. Everybody is like, "Can you hold my baby?" And I'm like, I don't want to. Cameron illustrates his anxiety about test results that he believes will not subside until the baby is born. He says, There's just something about it that bothers me. I think, like, the-- assigning remote probabilities based off genetic markers for potential issues is like enough information to, like, make you worry and prepare, but not so much information to fill you with dread. I think prenatal screening would be enough information if a complication existed to fill you as a potential parent with absolute dread and I don't think it would go away until the child was born. I mean, even the thought of it is making, yeah, it just-- I get how it could be beneficial and help you plan more, but just the thought of it as a potential parent bothers the crap out of me. These emotional responses to waiting out test results are not uncommon as Tluczek, Koscik, Farrell, and Rock (2005) found that there are high emotional outcomes as parents wait for screening results. These participants feel similar emotional strain thinking about potential results. Emotional outcomes for participants were not limited to waiting for genetic testing results, but also took shape in responding to results. Relief and joy were described by participants when receiving results that indicated negative indications for specific genetic markers/disorders. Amy explains, Yeah. No, absolutely, like, a great sense of relief. I mean, I think because both my wife and I are a little bit superstitious and a little bit anxious and, you know, because, like, we knew the statistics for miscarriage and I think she at least tends to be a little bit fatalistic. Like, we've been very apprehensive about whether this would be a viable pregnancy. Like, it was our sixth attempt at insemination but it was, you know, obviously the first time that she'd become pregnant. Amy and her partner's multiple attempts at pregnancy had made the news of their test 88 results an emotional affair. As was the case for many participants, no news was good news. For those participants who received negative test results, their emotional state was grounded in worry. Kelly, who received initial news that her results included a genetic disorder for her fetus, explained, Which, once I thought about it a little more-well I did things in definitely the wrong order, because I freaked out about it and looked up what trisomy 18 is, and it's horrible. Then thinking about that there's a 95 percent chance that all this- and eventually, my husband and I was freaking out through text message. Emma also received positive test results for a research project she had volunteered for that caused some emotional distress: I got a call from the doctor. He was like, "Hey, we got the results of your test back. I want you to come in and talk to me about it." I was like, "Okay, sure." In my mind, if it's ever bad, they never just tell you over the phone, right? They're calling me, so I immediately have where I was like, "Oh, great. They found something." I'm such a paranoid worrying person that I think they found some other bizarre genetic defect, and like you have two weeks to live. I was terrified. Unfortunately, resources and additional counseling were limited for participants receiving either positive or negative test results. For example, after receiving test results, Amy explains that additional resources were not offered to help explain their results, "I imagined that there would have been if there had been anything amiss, but because there wasn't, I mean, no, I don't think so." The lack of resources or offering of resources was a common theme as participants reported that those materials were often not provided. When resources were offered, they were mostly offered in the form of a pamphlet or other written text. Heather notes, "I think it was covered in the written materials that I was given, yeah." In addition to resources, participants also spoke about the perceived professionalism (or lack thereof) from providers that conveyed results to these patients. 89 In Kelly's case, she was given incorrect information from a nurse over the phone that caused anxiety. She explains, I asked her-I'm like, "What's the false positive on this?" She said, "5%." I was a little bit distracted at that point. I'm like, "You're telling me that there's a 95% chance that this is going on?" She said, "Yes." That's not what that meant. Then thinking about that there's a 95% chance that all this-and eventually, my husband-I was freaking out through text messages, and my husband is like, "You know, you can access your medical record. Why don't you just look?" I looked it up, and then, of course, a positive screen is anything more than 1%. One of the things I had read about was that this test result should be given in an odds ratio…I looked it up, and it was in 1 in 47, which is so, so far away from 95% chance. Kelly's ordeal was interesting, but singular in the participant population. Most participants spoke positively about the providers who reported results. Emma talked about her experience where she was able to ask questions despite her being under duress from a positive test result. He's like, "It doesn't change anything. Your diagnosis is still your diagnosis." Like, "We need to talk about what this could mean moving forward for you in terms of children and everything like that." I was like, "Oh, okay." It was brought up in a very-again, I think this is one of the reasons why I like this doctor so much. It was brought up in a way that he didn't beat around the bush at all about it. Right? It was very like, "Hey, I don't want to be the bearer of bad news, but-" He was just no bullshitter. He was like, "This is what this means," and I find comfort in that though in a regard cuz beating around the bush to me worries me. It makes me more stressed if anything else. Both Kelly and Emma's experiences remind scholars that the ways that providers convey results from high stakes testing matters in making patients feel comfortable and not causing additional anxiety. Finally, results were provided in a number of different ways to patients in this study. Participants reported results being delivered through email, over the phone, in their electronic medical record or patient portal, via regular mail, and in person. Each mode had challenges and benefits for patients receiving results. For instance, Nancy, 90 Anna, and Tiffany explained that in receiving results over the phone that there was no opportunity to ask questions. Similarly, for some patients receiving results through email or their patient portal, results were not explained aside from there being a note that the results were negative. Amy explains, "Yeah, I'm pretty sure she uploaded it to the patient portal. So I think I remember going over it and being like, ‘Negative, negative, negative,' you know." The reasons, concerns, processes, and results of reproductive genetic testing help to communicatively constitute RGT. The sociomaterial conditions of technology, the body, and information create a contextualization of the reproductive genetic testing experience for sex and gender minorities. Understanding how RGT is experienced, negotiated, and navigated allows providers and patients to pinpoint where improvements can be made during the screening experience, which I discuss in Chapter 6. Health Knowledge Production and Decision-Making In medical care, providers typically attempt to share knowledge and information to support patients in decision-making about health issues and concerns. Patients, similarly, attempt to share personal knowledge to their provider through disclosure and health histories to assist providers in deciding on diagnosis and courses of treatment. Thus, health knowledge production and decision-making are not necessarily mutually exclusive operations, but rather a mangled set of interactions between patient and provider. From this analysis, I think of knowledge production as the input and decisionmaking as the output for health information. In this section, I focus on two major themes of health knowledge production and health decision-making based on participant experiences with reproductive genetic testing. 91 Health Knowledge Production in Reproductive Genetic Testing Health knowledge production relies on providers and patients to both engage the process of creating information. As Mutaner, Chung, Murphy, and Ng (2012) explain, health knowledge production is a situated process that creates information within "ideological, political, and economic realities" (p. 915). As this analysis indicates, there is no singular process in which patients and providers produce knowledge. In experiencing reproductive genetic testing, three subthemes of health knowledge production were present: (a) Participants report that RGT knowledge is low prior to their conversation with their provider, (b) patients are actively participating in information seeking behaviors, and that (c) information overload is occurring. Initially, knowledge about reproductive genetic screening was reportedly low for participants. Kris explains, I came in pretty blind. I have had genetic testing done when I was a teenager, just trying to help me get some treatments that would work for health problems I was dealing with and had an amazing experience where they were able to be like, "Oh, you would have really sharp side effects from this class of medicine. But, this class of medicine you're really immune to, so you would need a ton of it in order to get it to work." I was just like thrilled with it, but I was young enough that I really didn't know what was going on. I just, you know, got the results and was happy. So I pretty much just showed up saying like, "Hey, last time I had questions this was like magic for me. So, let's do it again." I just kind of had this idea that it would just-- everything I needed to know would fall into my lap. Unfortunately, that was not accurate. That's how I walked into it. Participants actively understood that their knowledge on RGT was low. Tiffany noted, "I'm over here like I don't know. I was maybe like this big. So, then I felt really ignorant as well." Even after having conversations with their provider participants felt that they were still behind in understanding the technology. Chris clarifies, "On the specific test, I still don't really know much." Most knowledge about the testing was from hearing a 92 little about the screening process, Denise explains, "I didn't really know much about it. I mean, I've just kind of heard of the term. I knew there was different type of genetic testing. I just kinda knew about it through like finding out about different diseases." In some instances, such as Kelly's experience, participants agreed to testing without fully understanding what the screening would show. Kelly describes her experience by saying, I don't think I even really knew what they were testing for. They just said, "This is the time that we do these tests. It's just a blood test. Are you cool with that?" I'm like, "Okay." No, I really didn't know a whole lot about that type of genetic testing. Heather concurred, "Definitely thought that the provider would tell me about it, and I didn't research genetic testing specifically. I just knew that I want-I knew that I would probably want some of it, because I knew it was available." Because knowledge about reproductive genetic testing is so low, providers had work to do in explaining the screening. Unfortunately, some providers were not able to provide that information due to their own knowledge about the testing process and outcomes being low as well. For Megan, their provider was not prepared to answer questions about reproductive genetic testing even though that was the explicit purpose of their visit. She explains, "I mean we didn't really get a lot of information and the cost was pretty steep. But, it seemed like it went well. Yeah, it was good. Just wanted more information from the doctor." Although participants came into their discussions with low knowledge about reproductive genetic screening, many were engaging in information seeking behaviors about the screening. Cameron spent time asking questions of his provider in the interest of seeking out new information, saying, I asked what she knew about reproductive genetic testing. She explained, you 93 know, what she knew about it. And I asked her the benefits of it, which she said to see if you're a carrier for certain-- I forget the term. I'm not a medical provider, but, like, for certain diseases or markers, for certain, you know, complications. And I asked her what the risks would be and it seemed self-evident, right, that you might detect your own potential to have some sort of complication in the future, right. Diane agreed by seeking out a conversation with her provider. She notes, So I had that conversation…with my OB/GYN just because I want to make sure-you just never know. I just think it's good for me to have genetic testing, because I really just want to have a healthy baby, and if there's something to find out I'd rather know, you know? I just think it's a good thing for all couples to do regardless of sexual orientation. Other participants, such as Megan, both sought out discussions with their provider and engaged in self-research. Megan states, So, I told him that this was something that we were looking into and that we wanted more information. I explained that I had done some initial research, but that I wanted to talk with him about the different type of tests, costs, and what we would figure out. Chase also involved himself in self-research, saying, "the research I've done on my own seems to suggest a little bit otherwise, although it's fairly similar, that there are certain like amounts hereditary involved, certain amounts of like hereditary background behind like, you know, this is a possibility." Tiffany used the internet as an increasing number of patients do to understand the testing as well as seeking out multiple providers for knowledge. She explains, Mainly, I used the Internet. And then also every nurse that I know. Some nurse was like, "I don't know anything about this. I'm a school nurse." But I mainly just stuck with the Internet because for all of my friends I'm like yeah, it's probably fine. Pauline engaged in self-research to prepare for her provider visit, noting, I'm definitely someone who researches a lot partly because I like to go into my provider and already know what some of my questions are to them and what some of the things I'm thinking about are for testing or for any sort of procedure, I like 94 to go in having a sense of just at least the basics. As Laugesen, Hassanein, and Yaun (2015) note, scholars and providers have a conflicted view of the uptick in patient health research. On one hand, patients are taking an active role in managing their health interests, which a positive step in patient participation. Conversely, patient research can also decrease treatment compliance and make it more difficult for patients to believe conflicting information from providers than that found on the internet or from family. What is clear is that participants want more information about reproductive genetic testing. Regrettably, in desiring more knowledge, information overload was a problem for several participants. Wilson (2001) defines information overload as "a perception on the part of the individual…that the flow of information associated with work tasks is greater than can be managed effectively and a perception that overload in this sense creates a degree of stress for which his or her coping strategies are ineffective" (p. 113). Rose felt like engaging in more testing for information about their child would be too stressful, saying, Just none of the options tested for that specific muscular dystrophy gene, so if we would've wanted to test for that, it would've been a whole ‘nother spec of things that we'd have to go through, and it wasn't even really part of the conversation. I just wanted to throw that out there that we were just like, "Nah." Cameron argued that he was weary of testing because the information for the sake of information would be unhelpful. He explains, I just don't want to worry about it, I mean--either my own, you know, potential issues or, you know, what I might pass down to my kid. Yeah. Yeah, it's better not to know. I'd rather keep my head in the sand. Well, because I don't know necessarily what I can do about it. Chris also explains that too much information, especially negative information, is 95 something to push off. He notes, We have not because we've been just hoping that we would not be, at least from my end because I have one case. I'm hoping maybe if only one of us is a carrier, and the other is not, then maybe we would be in the clear. We'll see. I mean I have no idea. It may be the other way around, as well. Then I don't mind as long as it can still work, but we haven't really discussed the worst case scenario. We're trying just not to think about it at this point. We'll just take it one step at a time, see how it goes. Finally, Tyler noted that having negative information was an issue that would have created more anxiety and stress. You inform yourself, and some of our friends have had negative results I guess with the genetic testing, so it indicates that they have some kind of chromosomal defect, and to us that was a negative experience for them, and so we didn't really think that to ride out the last 22, 20 or so weeks of pregnancy with that information kind of hanging over you was enough of a decision to do the genetic testing for our child. Thus, information overload not only caused some participants to experience distress, but also caused them to not engage in original or additional reproductive genetic testing. Reproductive Genetic Testing Decision-Making Once patients have information as created by undergoing testing or shared via their provider, patients then must make decisions about what to do with that knowledge. Health decision-making models exist in several variations from paternalistic to informedpatient to shared decision-making (see Charles, Gafni, & Whelan, 1997 for a detailed explanation of each model). Although most models focus on the process of decisionmaking, this study focuses on particular decision outcomes for those experiencing reproductive genetic testing. Four decision-making subthemes emerged in relation to knowledge stemming from their genetic screening: (a) additional testing, (b) preparation, (c) not having children, and (d) terminating a pregnancy. 96 Initially, participants had to make or consider decisions related to undergoing additional genetic testing. Sara explains, "Well, if the NIPT (noninvasive prenatal testing) were positive, we would've had an amnio to confirm, so let's assume the question is if it were 100% confirmed." Anna and Rose also had to think about decisions for additional testing: Anna: Depending on what the blood work showed, we would-Try to advance to the next level. Yeah. We might advance. Rose: Just to find out more information if we needed to. Nancy faced a similar decision, saying, They recommended that we get the blood test done and if there were any additional abnormalities that we then could get an amniocentesis or additional genetic testing done. But, they really recommended that we at least get the blood test done. Decisions about sequencing the genetic tests were at the foreground, especially with participants that were engaging in prenatal screening. A second decision to be made was in preparing after the test. Participants had to make decisions about what they needed to do in preparation for a child with a potential disability. Cameron spoke about some of the decisions that he and his partner would need to make: Well, especially if you think there's a high risk that there's going to be some congenital defect or something, right, like you could set aside money ahead of time, you know, for the off chance or the significant probability that, you know, your kid's going to have some sort of issues in their early years before adulthood. Now I'd be less concerned with, you know, genetic disorders that the onset is when they've already, you know, reached adulthood. That doesn't bother me as much. They can prepare themselves. But if it's going to be in their childhood, well, we could take steps to adequately prepare for that, financially, especially. Helen tied her decision of preparing to her sexual identity, saying, Since I'm with a transperson, we don't have the "right" equipment for baby 97 making which means we'd have to go through artificial insemination or IVF or some kind of process and that takes a lot of money. So for genetic testing, we just wanted to know and prepare ahead. Reproductive genetic testing was an opportunity for participants to prepare and make decisions about what steps they needed to take for the sake of their future child. A third decision subtheme for participants was determining whether having a child was suitable. Tiffany was scared that the test would come back positive for a genetic marker or risk for genetic disorder. She explains, I guess my only main concern was that I was scared that it would come back and it would say something. Because it's something that you don't think about until you're doing it. And then it's all you think about it while you're waiting. And so I guess my only concern was that it was going to come back and it was going to say that I was carrying or like I could pass something on. And then I wouldn't be able to have my own kids. Pauline also questioned whether testing would preclude her from wanting to be a biological parent, saying, I think we have talked about me getting this testing. And I have said to him, "Yeah, this would just be good information to know, this would be really good information for me to think about, if I was ever planning to become pregnant, I would want to know that." I guess I haven't been explicit in if I had a positive, how much of an impact that would have for me as far as not wanting to pursue pregnancy. I have expressed that it's not a-- even if we were to parent, I'm not totally sure whether that means being a biological parent. This subtheme relied heavily on having information that would suggest a potential child would express a disability. Although some participants were negotiating whether they would even attempt to have children, others were concerned about terminating the pregnancy. Julie and Sara had an intense conversation about aborting their pregnancy, if their prenatal screen came back positive for Down syndrome. Sara explains, I feel like we-I mean we didn't even know we were on the same page, I guess, 98 until we started talking about it, but we felt exactly the same way, just what are we gonna do? Trying to determine if either person had a really strong feeling about keeping the pregnancy and raising a child with Down syndrome, what that looks like. We both, immediately, without hesitation, said, "Absolutely not," that we wouldn't do it. It's a hard decision, and, thankfully, we were never in that situation. You could never say with 100% certainty what you'll do when you've already been carrying something inside of you. You know what I mean? With that said, it's easy to say on the frontend of that, "No, we absolutely won't do it," but I feel confident that we were always 100% on the same page with that, and that we didn't want to do it. We talked about it, and we also talked about what happens because Julie was really concerned about having a miscarriage, and would we try again? Would we keep going, or if she didn't get pregnant, how long would we try? How long would we put ourselves through the emotional turmoil of not being able to conceive? We had all those really difficult conversations, but yeah, we knew. I mean we knew right away that we weren't going to continue the pregnancy. Kelly also had to think about what she would do if her genetic test came back positive. She stated, Because had the diagnostic ultrasound gone a different way, and she did have the markers for that condition, I would have had the amniocentesis to be sure at that point, but I don't think I would've carried a baby to term knowing that there's no way she could live. Some participants, such as Anna and Rose, were assisted in the discussion about termination by their provider. Anna explains, They talked about what we might wanna do should something come back not right with the pregnancy in terms of do we wanna carry it out? Do we wanna have an abortion? They don't use abortion. They say terminate the pregnancy. It was clear during the interviews for this study that these decisions about terminating a pregnancy were fraught with anxiety and were taken very seriously. These decision outcomes relied on knowledge provided by reproductive genetic testing. As health knowledge production and decision-making mangle themselves, participants walk a thin line between too much information that can paralyze decisionmaking and not enough information that can push patients into perhaps inappropriate 99 decisions. I argue later that patients need more concerted education and interactions with providers to process knowledge that is being produced and informing decision-making processes. Conclusion Now that the descriptive themes of the communicative constitution of reproduction, the communicative constitution of reproductive genetic testing, as well as health knowledge production and decision-making have been explicated, I build on these themes by engaging in a queer standpoint investigation in Chapter 5. Using Foucault's frameworks of technologies and queer futurism, I analyze how dominance and resistance play out in using the technologies of reproductive genetic screening, interactions between providers and patients, and societal considerations of reproduction. In Chapter 6, I use the preceding themes to offer clinical and practical recommendations to patients and providers that constitute the reproductive genetic testing experience as well as offer future directions for research and theory. CHAPTER 5 A QUEER STANDPOINT OF REPRODUCTION AND REPRODUCTIVE GENETIC TESTING That distinctive gay way of being, moreover, appears to be rooted in a particular queer way of feeling. And that queer way of feeling-that queer subjectivityexpresses itself through a peculiar, dissident way of relating. - David M. Halperin, How to Be Gay Sex and gender minorities struggle with navigating a health care system that is designed to control and limit its users/patients. Living in bodies of difference means that LGBTQ individuals and their narratives are often displaced to the margins. In Chapter 4, I detailed the narrative themes of sex and gender minorities experiencing and communicatively constituting reproduction and reproductive genetic testing while engaging in knowledge production and decision-making. That discussion is primarily descriptive in nature. To better understand the lived experiences of sex and gender minorities in the intersections of reproduction and reproductive genetic testing, I turn to theoretical considerations of my participants' experiences. Accordingly, this chapter explores the queer theoretical issues of how power dominance and resistance persist in patient-provider and patient-system dynamics. I also examine nondominant discourses by theoretically analyzing the coded data. To begin, I outline queer standpoint theory as a methodological and analytical tool for examining LGBTQ experiences in reproduction and reproductive genetic testing. Next, I apply Foucault's framework of technologies in a queer application of the study's themes. 101 Finally, I examine queer critiques of reproduction in relation to the data of this study through reproductive futurism and queer futurism. This portion of the analysis addresses the following research questions: • RQ 3. How do participants' narratives reveal power dominance and resistance in the discourses of reproduction and reproductive genetic testing? • RQ 4. What nondominant discourses are revealed in participant narratives concerning reproduction and reproductive genetic testing? Queer theory attempts to articulate the normativity of power and experience that is discursively constructed (Sedgwick, 1990; Warner, 1993). Applications of queer theory have taken many forms, from autoethnographic inquiry (Adams & Holman Jones, 2011) to rhetorical media analysis (Shugart, 2001) to interpersonal communication examinations (Chevrette, 2013). As communication scholars have taken up provisions of queer theory in both form and context, application of the theory has been slow to be utilized in health communication scholarship. In the following sections, I examine how power normatively plays out in health care experiences for sex and gender minorities. I then analyze how the dominant discourses from the ideological right and left have provided little maneuverability for LGBTQ individuals and couples wanting to engage in reproduction and reproductive genetic testing. Lastly, I investigate the differences between sex and gender minorities with RGT and the larger heterosexual population. Queer Standpoint Theory as Methodological and Analytical Tool Queer standpoint theory (QST) combines queer theory and feminist standpoint theory to create a methodological and analytical tool for understanding sex and gender minority experiences. Throughout this project, I have utilized QST to gather data, to 102 inform coding and theme creation, and to theoretically understand the experiences of LGBTQ participants. Queer standpoint theory follows four principles as guidelines for inquiry: (a) QST begins with the positionalities of queer individuals and communities as the starting point for research, (b) queer bodies (based on their experience, knowledge, and social location) have particular insights that form discourses about power and knowledge that can reveal dominance and resistance, (c) knowledge is socially constructed through experience and social position, and (d) QST scholarship deconstructs categories and embraces the historical, material, and social intersections of individuals and communities. Through queer standpoint theory, I began as a starting point with the positionalities of queer individuals and communities for this project. The focal point for data collection was in archiving experiences of LGBTQ individuals and couples regarding reproduction and reproductive genetic testing. Beginning with sex and gender minorities ensured that nondominant narratives of experience were accounted for and focused on. Thinking about participants' social location serves as a critical methodological instrument to acknowledging how scholarship often lacks the standpoint of queer bodies and voices. Second, queer voices provide unique insights into discourses of power and knowledge. While we can guess that heteronormativity and intolerance likely play out in provider offices and in the health care system, recognizing how heteronormativity exists and reifies itself allows for scholarship to reveal dominance and resistance. Additionally, inquiring about cost concerns of reproduction and reproductive genetic testing has given way to an understanding of the gatekeeping function of monetary power in preventing 103 access to these desirable health services. Third, the narrative themes of health knowledge production and decision-making indicate that knowledge is socially constructed through social positioning and experience. Participants acknowledge that their prior experiences with health providers and the health care system have contextualized their experiences with reproduction and reproductive genetic testing. Issues of disclosing their sexual identity, interacting with insurance companies, and dealing with intolerance have oriented their expectations of interactions with medical providers and health centers. The communicative constitution of reproduction and reproductive genetic testing focuses on the social, material, and sociomaterial interactions. Finally, queer standpoint theory deconstructs categories and revels in the intersections of individuals and communities. Queer standpoint theory recognizes that sex and gender minorities represent a variety of experiential standpoints. As such, the theory can be used in conjunction with other queer theoretical models and frameworks to assist in deconstructing categories of normativity. For example, I use Foucault's framework of technologies as well as reproductive and queer futurism to deconstruct categories of experience. If these constructs were puzzle pieces, queer standpoint theory orients those puzzle pieces to make sense of the larger picture. QST acts a set of starting points in an epistemological, methodological, and evaluative sense. Queer standpoint theory orients the scholar's epistemes concerning knowledge construction, power, positionality, and intersectionality. By orienting those epistemes in relation to bodies of difference, QST allows for scholars to collect data that privileges the voices of those bodies. The theory also positions the scholar's analysis in recognizing critical 104 intersections of experience and deconstructing problematic categories. Thus, queer standpoint theory bridged the gap between the methodological and analytical inconsistencies for which queer theory, on its own, is sometimes criticized. Framing Technologies of Power and Resistance Normative power dominance is present in participant experiences through interactions with their provider in the form of heteronormativity and intolerance as well as in the ways the health reproductive care system interacts with sex and gender minority patients. For example, Julie and Sara as well as Rose and Anna had issues in dealing with forms that excluded one of the partners. Many hospitals, reproductive care units, and clinics that involve children ask for "Mother's name" and "Father's name." As I will discuss later, this power pervades from a heteronormative system that cannot imagine or connect that parents other than heterosexual couples exist. To examine the power dynamics in play for LGBTQ couples and individuals, I turn to Foucault's framework on technologies. In Chapter 2, I detailed the four parts of Foucault's framework: technologies of production, technologies of signs, technologies of power, and technologies of the self. An examination of these technologies provides for a queer reading of the text and discourses saturating the reproductive and reproductive genetic testing experience for sex and gender minority participants. Technologies of Production Technologies of production are the tools, implements, and discourses that allow entities to transform, manipulate, and produce things (Foucault, 1988). This set of technologies is sometimes associated with the production process, which indicates that 105 scholars should not be concerned with only what is produced, but also with how it is produced. In the case of reproduction, a technology of production is the process of conceiving and giving birth to a biological child. Similarly, for reproductive genetic testing, the process of producing test results would also fit within this category of technologies. These instances of technologies of production are, of course, surface level in the sense that it is reasonable to assume that reproduction would involve production. Digging deeper, three other technologies of production are present within the data: (a) privacy of test results, (b) needing to pay for RGT and reproduction, (c) the use of RGT to manipulate desired results of child conception. First, privacy of test results was a concern for Steven and Kyle in receiving test results and undergoing reproductive genetic screening. Kyle's concern focused on the steps the provider was taking to ensure that carrier screening tests remained private. Privacy is a product that involves norms, rules, and processes to produce this important legal and ethical value. Emma expressed a fear that this information could get out and then stigmatize her for genetic marker results indicating mental illness. The process for producing privacy is important as critical failures in the process have tangible impacts for those already living on the periphery. For example, even though discrimination based on test results is illegal in the United States, real apprehension exists that a rollback on those rights may take place in an unfavorable legal and political climate. Thus, this analysis indicates that the process of privacy should be continually examined to ensure that its production is maintained to protect sex and gender minorities. A second technology of production encompasses the financial rules and norms for achieving reproduction and reproductive genetic testing. Undergoing assisted 106 reproductive technologies (ART) and RGT is expensive. Some scholars, such as Chambers, Sullivan, Ishihara, Chapman, and Adamson (2009), argue that the cost for ARTs are unreasonably high especially in comparison to pricing for similar or services in other countries. I argue that the high pricing is a technology of production as it creates a set of rules for which LGBTQ individuals and couples can participate in biological reproduction. Tiffany, a self-identified lesbian, notes that the high price means that she either has to figure out how to pay for the extraordinary financial costs of reproduction, divorce herself from her sexual identity and find a male, or go without having a biological child. The cost of reproduction serves as a gatekeeping mechanism/rule to being able to produce a child. Similarly, for reproductive genetic testing, costs are also incredibly high. Many participants explained that they had planned to undergo RGT, but were dissuaded by the cost (as was Megan) or the lack of insurance coverage (which was the case for Pauline). The typical cost of the test is relatively high both for what it costs to produce (Warsof, Larion, & Abuhamad, 2015) and run the test as well as the genetic screening's comparative cost to other countries (Minear, Lewis, Pradhan, & Chandrasekharan, 2015). Participants have been largely priced out of receiving RGT. When they do get tested, it is because there is a significant price-break (such as for Julie), insurance coverage (for Anna and Sara), or because they can afford to pay out of pocket (like Kyle and Barry). Understandably, this is not different from heterosexual couples wanting reproductive genetic testing, but there is a more substantial impact when circumstances of socioeconomic statuses are contextualized into the situation. LGBTQ individuals are less likely to have insurance (Eckstrand & Ehrenfeld, 2016) and more likely to face financial 107 distress such as poverty (DeFilippis, 2016) than heterosexual individuals, which means they are more likely to be priced out by the rules of production in receiving RGT. Although there is a substantially high cost to reproduction and reproductive genetic testing that serves to limit the ability for LGBTQ individuals to become biological parents, some participants are navigating these rules through intersections of RGT and reproduction. Kyle and Barry, after researching the costs for surrogacy and IVF, decided that using preimplantation screening would give them "the best bang for their buck." This couple determined they could use reproductive genetic testing to decrease the likelihood of failure from assisted reproduction, thus decreasing the potential cost of multiple assisted reproduction attempts. Kyle and Barry's decision leads to a third technology of production as the use of RGT to manipulate the desired results of reproduction. Although their decision to utilize reproductive genetic testing is explicit in securing a particular outcome for their biological child, other participants were using RGT at least implicitly to make decisions about what outcomes for their child were acceptable. For example, Julie and Sara's discussion of terminating the pregnancy indicates that they are using the process of RGT to determine what type of child is produced. Their intent to abort a fetus that showed genetic markers of Down syndrome is creating a pregnancy that is acceptable and unacceptable. Disability scholars have long feared the use of genetic testing to eliminate difference and especially screenings used to indicate disability (Camporesi, 2010; Clancy, 2010; Hens et al., 2013). A queer reading of these decisions would argue that participants have created a normative association for which disabilities in a potential child are acceptable or unacceptable. Amy explains this tension by saying, 108 And I mean, it's certainly a fact that, like, fewer and fewer kids with Down's Syndrome are being born because most people are choosing to abort. And my gut feeling is that that is a loss for humanity as a whole. I feel like-- I feel like people with, you know, neurodivergence, with genetic differences, with disability are very, very valuable and I feel like the way we think about the inclusion of people with disability in our society is, like, vital to the, you know, the entire ethical framework of how we function as human beings in the society. And it's a very thorny question because I do think that there are conditions that, like, it is better not to be born than to have them and I would probably include Tay-Sachs among them. I don't know that I would include cystic fibrosis among them. But that's why I was glad that the cystic fibrosis test was before my wife got pregnant, because I think if he had, you know, if they had both been carriers, I think we probably would have gone with a different donor. Whereas if, say, for whatever reason my wife had been, you know, been pregnant and been tested and her-- I don't even know if there a pregnancy test for cystic fibrosis. I don't think there is. But say if there had been, I don't know that we necessarily would have aborted, but that would have been a very significant change to how we thought the genetic tree of parenthood would go. Having to make decisions about what disorders or diseases are terminable is an ethical question to which participants struggle as there is not a clear bright line. The tension for participants does underscore how the use of reproductive genetic testing can assist in manipulating what type of child will be born. Technologies of Signs Foucault (1988) argues that technologies of signs and sign systems are what we might call semiotic technologies. These are technologies that can include or exclude populations from being able to engage in meaning. These technologies are symbols that offer significations and meanings. Technologies of production and technologies of sign systems can work together contributing to a particular discursive environment. For instance, some hospitals and clinics have created policies to help protect sex and gender minorities from discrimination. But, as Anna notes, there can be an ulterior motive in bringing in clients to those clinics, thus producing patients. There are three technologies 109 of signs prevalent in the data: (a) naming of parents, (b) heteronormative nonverbal interactions, and (c) the lack of explanation of results. Initially, Anna and Rose as well as Julie and Sara relayed stories about how hospital and clinic documentation asked for parents' names. Anna explains, "We did classes through our hospital like parenting classes. When we went into the parenting class, it had us write mother's name and father's name, and so I just scratched through father and put mother and put Rose's name." The hospital had created a sign system that privileged heteronormative considerations of naming parents without regard to other potential configurations of parenthood. To resist these sign systems, Anna and Julie scratched out the offending word in an act of erasure of the sign. Julie says, "If it ever said ‘father' versus ‘other parent,' I would scratch it out and write ‘mother' or ‘other mother' or whatever." This type of erasure can be productive acts of resistance against problematic discourses that refuse to acknowledge marginalized identities (Lecercle, 2002). Rose and Anna explained that the hospital realized their mistake and promptly changed their forms from father/mother to parent/parent to consider the diversity of parent identity. A second technology of signs promulgated in communication of providers during and after acts of sexual identity/sexual orientation disclosure from patients. Julie and Sara describe an interaction with a provider that was troubling. Julie: I went to the doctor, as well. Sara: I kind of thought she was antigay, actually. We mentioned wanting to have a child or something. Julie: Oh, yeah, and she was not very nice about that. Sara: Yeah, and she was just telling, "Oh, well, maybe you should wait ‘til 110 you've been together longer." Interactions between patients and providers were surprisingly rife with examples of providers communicating intolerance, heteronormativity, and a lack of connection between the patient's identity and the health needs of the patient. These communicative encounters are demonstrably technologies of signs as the provider is using significations and meanings to relay their displeasure, intolerance, and lack of cultural competency. Emma's experience with the nurse that dead-named her resulted in Emma leaving her appointment and finding a new provider. In an act of resistance, Emma used social support networks to find a new health care clinic that would be LGBTQ-friendly. Similarly, Cameron sought out a list from his insurance company. When I'm talking about a provider generally, when I talk about specific doctors, for instance, at Kaiser Permanente, after that experience with the last doctor, I called Kaiser Permanente and asked for, like, a gay-friendly doctor because I thought that might be better. And they were more than willing to line me up with, you know, like an LGBTQ, like, friendly doctor. Oh, they were more than willing to. I mean, I found it through online web search about LGBTQ care with my insurance. So they had a site and you could already call to change a doctor and they just, I believe on their site it said, you know, if you'd like a doctor that specializes or is friendly for LGBTQ people, like, just call the regular number and ask for what doctors we have available. And so it was a really easy process, actually, and they apologized for my experience with that one. These queer-friendly lists were also created by community organizations as Kris and Chase noted: Kris: There's a list. Chase: Guillermo's Kris: Yeah. I'm in a trans Facebook page, and they have a list of in every city in Utah everything from therapists to dentists to doctors that have been good or are safe-zone trained and actually really good. It doesn't have as many options as we'd like. Khalili, Leung, and Diamant (2015) concluded that these LGBTQ-friendly lists assist 111 patients in making choices about what providers are more likely to interact with them in professional and non-negative ways. Participants are using these social support networks to resist being forced into patient-provider interactions that they are uncomfortable with in their health care experience. A final technology of signs relates to the lack of explanation and general communication about reproductive genetic testing results. Participants reported that results information from their genetic test was low and or never explained. Often participants were given an emailed report that was difficult to decipher or simply told that there is nothing to worry about. This is concerning as most carrier screening results should report back at least some variations of uncertain significance (Richards et al., 2015). Variations of uncertain significance (VUS) mean that most laboratories conducting genetic testing classify some variations/mutations as being of a potentially unknown risk. These VUS results require explanation (Cheon, Mozersky, & CookDeegan, 2014), but most participants undergoing testing were not given counseling of their results aside from being told over the phone that they were negative. This analysis of the technology of signs presents a problem as discussions of genetic testing results ought to be explained, but patients are left to decipher the meaning of the results without provider guidance. Technologies of Power Technologies of power determine how individuals should act and make those individuals subject to domination through administration or regulation of society. By objectifying the subject, these types of technologies strip power from individuals (Foucault, 1988). Two subcategories constitute technologies of power in the data: patient 112 administration technologies and organizational technologies. Patient administration technologies are technologies used by producers (the health care system, providers, laboratories, hospitals, the government, etc.) that seek to control the behavior of patients in regards to health, reproduction, and reproductive genetic testing. These technologies are often closely aligned with technologies of sign, as technologies of power will, at times, utilize discourse to implement instances of control and dominance. For example, Julie and Sara's experience of a provider attempting to convince them not to reproduce would be a patient administration technology. Unsurprisingly, providers were often the producer of control for patient administration technologies. Heather relayed that she was reprimanded by her provider for not adhering to a food journal during pregnancy. She explains, Yeah, I had to keep a food journal and got reprimanded a couple times for my fast food that I wanted to eat, cuz I had cravings. Just they're like whatever you eat is feeding your baby, and make sure that it's like-the nutrients that you're giving your baby now, they're going straight to the baby, so make sure, cuz that can impact-that's not just that baby, that's your grandchildren and your great-great grandchildren. It was to make me-well, it was to make me not do it again, I guess, but. It was direct, but it was in a very-it was in a caring way too, cuz they just are really passionate about the way Americans eat, and that it's not good. These forms of discipline engrain themselves in cultural practices that, as Heather notes, is done "in a caring way." Megan notes that her experience with a provider was dismissive and patronizing. She says, The one that I keep coming back is - it felt like they were talking down at me. They really didn't pay attention to what I wanted. I don't know. I felt like a child. I know that they're in charge, but - The previous examples are closely aligned with many patient-provider experiences that can be challenging and dominated by the provider. The data from this study indicate that LGBTQ individuals and couples face an additional layer of dominance 113 through heteronormativity and a lack of LGBTQ-competency. Emma explains that this heteronormativity forced her to always consider her negative health effects as something based on her sexual identity. She says, It also helps you understand the way in which a lot of people have internalized their own oppressions inside of themselves. One of the reasons people can be so afraid to come out, or so afraid to talk about their illnesses, as well, is because, at least in my experience, my LGBTQ identity was always the cause of my negative effects. Right? I would come in, despite having a history of ulcers, and I would come in with a really bad stomachache and a runny nose. Probably, I got a staph infection or something, and the doctor's first immediate reaction would be, "Well, we should run an HIV test for you because you have had contact with at-risk populations." I'm just like, "Yeah, but that has nothing to do with this right now, I promise. I guarantee it has nothing to do with this." I'd been tested by the same doctor 6 months prior and had not had any interaction during that six months. Although providers ought to be concerned about LGBTQ-issues, participants reported that those issues were inevitably tied to matters like sexually transmitted infections (STI) rather than specific patient health concerns. Chase relayed his story of a provider that would only consider his health concerns as a symptom of a potential sexually transmitted infection despite knowing the difference between a STI and other medical issue. Participants have taken to resisting patient administration technologies through utilizing previously discussed social networks to be able to navigate around dominating providers. Other participants have taken to resisting via forms of patient self-advocacy. For instance, Amy, Emma, Cameron, and Chase have gone out of their way to ask more of their providers and seek out provider superiors when they were unhappy with provider care. Further, Kris and Kelly both expressed distrust of medical providers and have taken to asking for second opinions for serious medical issues. These acts of resistance allow patients to relieve domination, but marginalization is still an incredible problem for sex and gender minorities. 114 The second category for technology of power involves organizational technologies. These technologies are the organizational processes that allow the system to administer itself. For example, insurance and billing comprise a system of practices that allow hospitals, laboratories, and clinics to remain profitable or at least zero-sum. Participants spoke frequently about the importance of insurance as part of the health care system. Amy recalled how a provider that she enjoyed was suddenly dropped from her insurance causing her to seek out other medical care. The provider before my current one was actually a trans nurse practitioner. And I found her as like part of the-- there's like a little subpractice here in the city that like specializes in queer family care. And so, I was like, that's awesome, you know, a trans practitioner, and she was amazing and she like asked me about, you know, gender identity and then she asked me about my history; like she was really, really, really excellent. And then, my insurance dropped that practice so I couldn't go back to her. Chris concurs with the potential problems of not having insurance. I think some people coming from different backgrounds and different employment status and insurance status, I think it would be a completely different story. I mean me having not had any insurance, hypothetically speaking, it would be a lot worse for sure. I would be very, very worried about injuring myself or having to go to any sort of doctor or any service, or any tests for that matter, because it's so ridiculously expensive, and the insurance companies are not exactly human-friendly in terms of paying for what's required, so I don't know. Yeah, I guess it's one of the big issues that's very, very different for different people. For some people, it would be totally okay. For some people, it would be so, so horrible. For reproductive genetic testing, insurance becomes an organizational technology that dominates and controls the patient's ability to receive care. What is likely more problematic than insurance becoming a gatekeeper to RGT and reproductive care is that participants recognize the problem of insurance control, but have little power to change the organizational structures that dominate patients. 115 Technologies of the Self Technologies of the self are strategies that account for self-regulation rather than hegemonic regulation that are seen in technologies of power. These technologies enable individuals to use their minds and bodies to regulate conduct in an effort to obtain a selfvalued good. Using Foucault's framework, four technologies of the self were described in participant narratives: (a) partner-patient communication, (b) intersections of decisionmaking and choice, (c) distrust of technology, and (d) the embracing of difference and disability. Foucault (1988) argues that technologies of the self can and often do work in conjunction with the help of others to achieve individual ends. Participants describe relying on and communicating with their partners to get past anxiety and certain emotions, make decisions, and to achieve having a child. For example, Kelly describes a conversation with her partner about whether they would terminate the pregnancy due to a positive marker result. Yeah, we definitely talked about all of that. He's kind of-he's funny. In the end, basically, he's very supportive, but very much, "It's your body, and you get to make this decision." He's like, "I'm not gonna"-he could see the value in knowing, and, at the same time, he was not willing to say that he thought I should or should not do it. He always went with me. I mean I think almost every appointment he was there. It was funny, because they made him leave the room sometimes. Participants communicated with their partners to navigate the complex issues of reproduction and reproductive genetic testing, thus lessening the burden on themselves emotionally and psychologically. Although participants could rely on partners, one of the main benefits to undergoing reproductive genetic testing was to be able to gather information to make 116 decisions and participate in the activity of choice. Participants could choose one embryo over another, they could choose to terminate or keep a pregnancy, they could decide whether or not to even have children, and they could make decisions about what genetic material or biological carrying could be used. These choices afford LGBTQ patients the ability to take back control over a process and system that severely limits their ability to make decisions. As Julie explains, reproductive genetic testing as a technology of the self offers a way of providing their child as many advantages as they could. I wanted to give our child as much of an advantage as possible in life. If I happen to have this disease I can't think of, or was a carrier, why would I pick a donor who's also a carrier, and possibly my child will have that? When it's very easily preventable. Just pick a different donor. The act of choice-making serves as a way of constituting themselves in relation to power. Though some participants actively pursued the use of material technology (rather than Foucauldian technology), others were distrustful of the use of reproductive genetic screening technologies. As I have previously indicated, participants were highly distrusting of amniocentesis despite provider recommendations for that form of testing. In addition, Kelly also had a bad experience with ultrasound equipment that provided a false positive moment. She reports, Like I said, that's one of those things where along the line somebody told me that where they click on the screen to make those measurements, I mean a millimeter here or there makes a huge difference as far as what that expounds to when you make it into what her weight is or what her length is or whatever. This distrust of material technologies creates opportunities for LGBTQ individuals to take their health decisions back into their own hands. By taking back decisions from the screening technologies, sex and gender minorities can utilize technologies of the self to integrate self-trust. 117 A final technology of the self utilized by participants was the embracing of difference and disability. Amy detailed how she and her partner had thought about incorporating potential differences from their child into their live. I'm both queer and sort of, like, gender nonconforming and so I think this is an issue that I've thought about more than probably typical gender conforming straight people have. And also because, you know, there isn't that sense of, like, deviation from normal. But honestly, I don't-- I think even if I hadn't been queer, I don't think I would have been normal. Like, I'm kind of a weirdo and my family's kind of weirdos, I mean. But, yeah, I mean, I do think that we felt more prepared to raise either a trans kid or an intersex kid or a gender, you know, nonconforming or nonbinary kid. I think we did feel more prepared, you know, possibly just because we've read more about it. We've read more accounts from people who actually have had those experiences than your typical, you know, cishet people have probably read. And we've probably thought about it more. So, yeah. And also, like, I know that not all intersex conditions are genetic. I know there are, like, hormonal components. But it was something, it was, you know, I think it was probably fairly unusual that we had that conversation before even getting the test results back. I don't think that's necessarily a typical conversation that people have. Like, we talked about names that might work if we have a kid whose, you know, probably gender is not known. I mean, we actually did wind up giving our kid a pretty unisex name, mostly because we liked it, but, like, I won't say that it wasn't a consideration. Helen, a deaf woman, noted that she was excited for the possibility of having a child with a disability. She explains, "It wouldn't impact my decision to have children at all. In fact, if they were going to be Deaf, I would be thrilled." Kris also detailed that she and her partner would be excellent parents to a child with a disability, but would want to adopt rather than bring a child with a disability into the world. She says, We'd be great at it, especially like maybe adopting a kid. Like I would just feel guilty of bringing someone into the world knowing what they were facing. But like if I was told you're having a baby tomorrow and they're going to have Down's, I'd be like, "Sweet." Like, "Let's get started on this," you know, and Down's especially. When I was a little younger, back in the heyday, I did a lot of work with kids with Down syndrome. So that's like one especially that I'm like, "Oh, yes, please." I'd love to adopt a kid that had, you know, a disability. I think we could-- I think that we have like a skill set, you know, to really be good parents. 118 These instances of acceptance of difference from participants speak to the embracing of one's identity and being prepared for the challenge of raising a child with a body of difference. By participating in practical critique of difference, participants have created a strategy of resistance to normative discourses concerning disability. This is additionally supported by the large number of participants that cited preparation as a reason to undergo reproductive genetic testing. In preparing for a child with a disability, these sex and gender minorities are making a decision to move beyond tolerating difference, but embracing queerness. Foucault's framework is useful because it can identify elements of a complex system, but also treats each element as part of an interrelated system that is distributed throughout the process of experience and production. In detailing the four technologies, we can discern where and how power dominance and resistance take place within reproductive and reproductive genetic testing realities for sex and gender minorities. Foucault's framework of technologies provides insight into power and control as it examines the nondominant discourses of technologies. Reproductive and Queer Futurism The typical dominant narrative for and in relation to the LGBTQ movement has been a normalization of queer bodies in cishet civil society (see Bernstein, 2015; Dorf & Tarrow, 2014; Halperin, 2012; Santos, 2013). White (2016) argues that normalization requires queer bodies to accede to and be dominated by heterosexuality and heteronormativity. Essentially, in normalizing, sex and gender minorities give up and/or minimize their difference in deferring to cishet civil society. Discourses of "being normal" have empowered as well as setback queer individuals and communities as they 119 have inspired integration into society, but at a cost of losing some of what makes those communities different (Richardson, 2004). In assessing the primary nondominant narratives in this study, I turn to the concepts of reproductive futurity and queer futurism. I apply these constructs to better understand the desires of LGBTQ individuals and couples wanting to participate in reproduction and consider reproductive genetic testing. A Future of Reproduction? Reproductive futurism, as described by White (2016), is the "future-oriented, heteronormative social order" (p. 963). This is a society that privileges those who can reproduce and are idyllically "pure." Those individuals and structures that contribute to the Child's existence are placed at the forefront and those that are deemed as a threat are demonized (Edelman, 2004). Thus, a tension exists in wanting to engage in reproduction, but also wanting to be queer. Participants forward four nondominant narratives that are addressed by reproductive futurism: (a) discourses of tension between biological drive to reproduce and wanting to reproduce to be "normal," (b) discourses of bisexual passing, (c) discourses of tension between identity and reproduction, and (d) discourses of reproductive genetic testing to remove difference. Tension between biological drive and normalization. Lewin (2009) explains that same-sex couples come to reproduction for a variety of reasons including biology and normalization. Even though there is robust desire to reproduce, Edelman (2004) has argued that such a desire is fictionalized by discourses of normalization. Essentially, the desire one feels to reproduce is not necessarily biological, but rather socially oriented. This sets up an obvious tension between wanting to reproduce for biological purposes and wanting to be a normal part of cishet civil society. Participants, such as Cameron and 120 Pauline, report that there is a substantial desire or even a biological drive to reproduce. As Amy explains, Why do I have that fascination? Other than that it's just really fascinating, which is kind of pedagogical, because it's so complex. Because it's so mysterious. Because, you know, you start with a clump of cells and then you wind up with a person at the end. Because there's this like symbiotic relationship, you know, between the mother and the fetus as it's developing and growing and there's like two-way communication between them both and they're both like negotiating this, you know, very complex interaction. I mean, I don't know. It's just actually cool. Wanting to reproduce is sometimes biologically driven to shepherd our genes to a new generation. This desire to reproduce for the sake of having a biological connection to the child, to pass along our DNA, and to experience carrying a child were all expressed as significant reasons for participants to want to engage in biological reproduction. Conversely, participants expressed feeling pressure from family and society to start families. For example, Chase explains, Yeah, my family comes from a very traditional background, everyone fills their traditional roles, everyone does this, everyone does that, kind of like we have the mother, the father, the grandparents that are involved the aunt, the uncle, the house, the family, all of the siblings, because I had one sister who is like 12 years older than me, and my cousins were all raised practically as my brothers and sisters, and I had four of them that came from one parent, and they were all very close, very big family, and there was always talk of like "We need a bigger family, bigger involvement in this, like everyone together, everyone banding together thing. That was always, you know, drilled into me for years and years and years and years. And it was like-- I mean some parts of me are still a little bit traditional here and there…But I still admire the family values and everything and like I definitely do have dreams of like starting a family and things like that. But, it's just a lot of obligation too, a lot to like sift through, a lot of like personal stuff to sift through and a lot of just time to devote to it, I guess. Tiffany also has felt a burden from her family, which has caused her to make decisions about starting a biological family. She reports, "And then also I'm from here and she's not. She's from the north. So my family wants this more than her family wants this. Like I 121 need to give them this one thing that they can have." As Halberstam (2005a) notes, these feelings and desires to be normal create destructive associations with queerness. The tension between biological drive and drive to be "normal" is one that is also seemingly recursive. Although participants report that they have a biological drive and that they want to feel normal, Gary explains that part of his pursuit of reproduction was to be a normal part of society by giving in to his biological drive. He explains, I don't think I knew I wanted to be a dad until everyone around me started to have kids. I felt like I wanted it too. I wanted to be there. You know, out there having a child that was mine, that I was biologically connected to. I think it's normal to give in to your biological needs. Gary's experience indicates that this tension is more likely, as Putnam, Fairhurst, and Banghart (2016) note, a paradox. Because the contradiction between the biological drive and need to be normal reflect back on each other and persists over time as reasoning to reproduction, this paradox situates itself as reasoning that appears to be mutually exclusive but is not. While Edelman and other scholars argue that the biological drive is a distraction from the normalization process of LGBTQ individuals and communities, these data suggest that these tensions inform one another rather than persist in a dialectic. Although normalization of social interaction might play a part in the desire to reproduce, biological needs are a consideration that cannot be ignored. Even though Edelman and other scholars set up a binary between the biological and the social, participants describe both as substantive reasons to engage in reproduction. When conceived as a paradox, this opens up opportunities to deconstruct the constructs away from being mutually exclusive. For example, reproductive futurism seeks to critique queer individuals and communities that desire to have a child as it distracts from the jouissance of being queer. But if we understand that the reasons for participating in reproduction are not mutually exclusive, 122 then we can also recognize that a wholesale rejection of normalization would disenfranchise LGBTQ individuals from being able to make decisions about their own jouissance (including, but in particular, biological reproduction). Bisexual passing. A second nondominant discourse revealed through this analysis is that of passing by bisexual individuals. The data for this project present an interesting theme in that bisexual individuals were/are allowed to pass in choosing to disclose to providers, choosing a different or same-sex partner, and having more choices in reproduction. The concept of passing is derived from Goffman's (1963) work and generally is defined as marginalized bodies passing as majority bodies (Harrison, 2016). As Lingel (2009) indicates, bisexual individuals can often pass for queer and straight. This fluidity affords them with decision-making power about what information to share and what desires they seek. For example, Chris details some of his thought process as he was determining a mate, Yeah, obviously, it did become because-well, I mean my current situation, it's a lot easier to talk about the idea of having children and all the planning of it and everything because my partner is a female. In this case, it's generally easier, but then if it was not a female, if it was a male instead, it would've been, I think, quite a bit more complicated because it would involve maybe surrogacy, and, also, who of us would be the, I guess, biological father, so to speak, of that child. Because bisexual individuals can pass between perceived heterosexuality and queer behavior, their experiences create an interesting waypoint in difference. Chris, Steven, Megan, and William all indicated that choosing a different sex partner made it easier to participate in reproduction. The privilege of passing speaks to Edelman's criticism of futurity when sexual orientation can be minimized in favor of reproductive engagement. Edelman (2004) argues that even if passing is not a primary cognitive decision, normalizing behavior (e.g. 123 passing) devalues difference in favor of reproductive normalization. Bisexual participants in this study are sometimes making decisions to pass, because there is an advantage to how they can limit their difference on impacting items such as their health care and reproductive decision-making. The ability to make choices about their jouissance is an afforded benefit of bisexual passing. Tension between identity and reproduction. A third nondominant discourse that was present involved a tension between sexual identity and desire to reproduce. For instance, because the costs for reproduction and reproductive genetic testing are incredibly high, this places a gate to only the individuals from the LGBTQ class that can pay to reproduce. Cost of normalization is so extraordinary that only the most socioeconomically desirable can engage in the act of reproduction. Tiffany's statement concerning having to make a potential choice between abandoning her sexual identity and having a child by mating with a "dude" or foregoing a biological child and maintaining her sexual identity is instantly troublesome. This potential choice reveals a clear tension between the cost of reproduction and one's sexual identity, Halberstam (2005a) argues that costs for reproductive services for LGBTQ individuals and couples are a way for heterosexuality and heteronormativity to minimize the deviance of queer reproduction. Essentially, an argument could be made that pricing out queer bodies from reproduction forces those people to give up their deviance (if that was even a possibility) or be kept from polluting the Child with queer deviance. Even if there is not an explicit roadblock to reproductive access, the implicit barrier is substantial enough to give many LGBTQ individuals and couples pause for concern. Reproductive genetic testing to remove difference. A final nondominant 124 discourse encompasses a move to use reproductive genetic testing to eliminate disabilities from potential offspring. Edelman, White, and Halberstam's fear is that reproduction is used to terrorize and mute bodies of difference. That fear is supported to some extent by data in this study. Participants indicate that they are willing to terminate a pregnancy based on genetic disorder, disease, or disability. Amy, Julie, Sara, Francis, Brandon, and Kris indicate that depending on the disorder (i.e. Down syndrome, cystic fibrosis, etc.), they would consider terminating a fetus that tested positive through reproductive genetic testing. Further, Kyle and Barry actively used preimplantation genetic diagnosis (PGD) to help choose which embryos would be genetically better for IVF. Participants are using RGT as a means of selecting against forms of disability. This concept of eliminating disability is not lost on participants like Emma, who explains, I was worried about them taking my DNA and then using it in some other study to try and find other genetic markers for things like transness or divergent sexualities, said in heavy quotation marks. [Laughter] I think that I was worried that somebody would get access to this genome somehow, and then would eventually try and find a way to figure out those gene markers, if they do exist, what they are and where they are. The biggest thing that's always been scary to me about genetic testing is-I'm already out. I don't care. Right? Cool. Whatever genes you want, at this point, I don't really care, but I realize that that could have scarier implications for other people moving forward. Finding those genes because it's a little bit scary for younger kids, for genetic screening of infants before they're born kind of stuff. That's what scares me is that there is a potential to canonize what genes do and don't-like the gay gene might really exist. Who knows? If they find it, that's something that was really scary to me. I think that there is a level of mystery that I want in the genome and a level of mystery that I don't. I wanna know what causes things like Tay-Sachs, but I don't wanna know what exact gene sequence makes a person gay or not, if it exists. That scares me because that means people can target it and get rid of it. That is the thing that's always been the scary, scary thing to me is people recognizing identities found inside of genomes as a way of controlling societal structures. Participants are deciding, rightly or not, what disabilities are worth living with and which 125 disabilities can be selected to discard. Edelman would argue that participants are contributing to a system and society that marginalizes difference by choosing to eliminate difference from reproduction. Whether those decisions are done discretely (such as choosing a sperm donor with a low chance of carrying a genetic disorder) or discriminately (such as considering specific embryos for implantation after PGD), bodies of difference are being demonized and marginalized. Queering the Future by Celebrating Difference While reproductive futurity criticizes how reproduction is used to marginalize those who identify as LGBTQ, queer futurism argues that reproduction is an empowering possibility when queerness is centered as part of the reproductive process. Muñoz (2009) argues that the Child is not predetermined, but is in the process of becoming. In conceptualizing queer futurity, Binnie and Klesse (2012) argue that reproduction should be a possibility of sex and gender minorities. Rather than taking a pessimistic point of view that reproduction is always already damned via heteronormativity, queer futurism imagines the future as one that recognizes queerness and is positioned by activism. The Child is one where a body of difference (queerness, disability, femininity, etc.) is celebrated rather than marginalized or disciplined. Although there are clear instance of participants taking steps to engage in reproductive futurism by eliminating difference and disability, other participants demonstrate their willingness to participate in a system of queer futurity when they gladly accept difference and disability. Helen's joy of potentially having a deaf child, Amy's excitement about having an intersex baby, and Kris' recognition of how his experiences with marginalization have given him the tools to deal with difference indicate that queer 126 futurism is possible. By recognizing their own capabilities to center their children as different is already a disruption to many dominant narratives that attempt to exclude (or even terminate) those differences/disabilities. Conclusion In summation, this chapter examines the theoretical themes in understanding the queer experiences of reproduction and reproductive decision-making. By utilizing Foucault's framework of technologies, this analysis has established that experiences of sex and gender minorities are complex and varied in forms of difference from heterosexual individuals regarding reproduction and reproductive genetic testing. Applying reproductive and queer futurism, this analysis considered the tensions of biology and normalization as well as how difference and disability are centered or disrupted. Finally, the chapter made a theoretical turn in advancing queer standpoint theory as a way of methodically collecting and then analyzing data through queer readings of experience. The next chapter discusses the theoretical and practical implications of the analysis, including a discussion of the limitations and future directions for research that build from this study. CHAPTER 6 DISCUSSION AND CONCLUSIONS This project was initially motivated by my desire to understand my own health and reproductive concerns. In the process of researching reproductive genetic testing experiences, I have sought out the experiences and voices of other LGBTQ individuals to understand how they have navigated these experiences. This analysis revealed that nondominant discourses exist in normalizing (for better or worse) sex and gender minorities. The analysis also indicates that the process of normalization sometimes leaves those individuals and communities reliant on technologies of reproduction (such as ART) and reproductive genetic testing to make decisions about reproductive care. While Chapter 4 identifies how LGBTQ individuals and couples communicatively constitute reproduction and reproductive genetic testing, Chapter 5 theoretically investigates how power and discourse are utilized in sex and gender minority interactions with RGT and reproduction. This chapter examines (a) the theoretical implications of creating new theoretical perspectives in queer standpoint theory and the communicative constitution of health, (b) the differences unveiled by queer standpoint theory, (c) the practical/clinical implications of this analysis, and (d) the limitations of the study as well as the future directions for research. 128 Theoretical Implications: Creating New Theoretical Perspectives Throughout this study, I have examined ways in which sex and gender minorities experience reproduction and reproductive genetic testing in relation to discourse, sociomateriality, knowledge, decision-making, power, and minority narratives. In conceptualizing this dissertation project, I realized that prior theoretical frameworks were lacking in framing LGBTQ health experiences due to a draw towards paradigmatic ends. Thus, new models for conceptualizing health (the communicative constitution of health) and queer experiences (queer standpoint theory) were offered. In this section, I discuss how the communicative constitution of health and queer standpoint theory make a significant contribution to the study of health communication and to examinations of sex and gender minority experiences. Constituting the Communicative Constitution of Health Manning (2014) and Cooren (2012) have made a call to extend the communication constitutive approach to other disciplines. This project has taken up that call by introducing the communicative constitution of health. Due to paradigmatic constraints facing health communication scholars, research in health communication has fit primarily in one of two camps: social construction or the biomedical model (Babrow & Mattson, 2011; Zook, 1994). While those paradigms have been instrumental in investigating health communication phenomena, the perspectives also place a substantive limitation on scholarship that works to bridge the gap between biological determinism and social construction. The communicative constitution of health establishes a new paradigm that suggests social construction and biomedical modeling can work together in understanding social and material conditions. As I explain in Chapter 4, social, material, 129 and sociomaterial considerations are not mutually exclusive in participant experiences. Participants' experiences draw on how their body is feeling and how they communicate about their health. The biological and social experiences do not take place separately, but rather they reflect back on one another, inform one another, and reify one another. Participant narratives provide substantive evidence that an additional paradigm is necessary to frame the experiences of patients that speak to both their biological/health concerns and their social processes/discourses. The communicative constitution of health (CCH) distinctly fills the gap established by the rift between the biomedical and social construction perspectives. As seen in Chapter 4, biological materiality is persistent in the data. Participants indicate that reproductive testing technology, biological impulses, assisted reproductive technology, processes for RGT, etc. are ever present in their health experiences concerning reproduction and reproductive genetic testing. A social construction approach might have swept aside these important aspects of the health experience to focus primarily on the social processes (Gagnon, 1990; van Anders, 2015). In addition, communication is centered in the reproductive and reproductive genetic testing experience for participants. Communication persists in reproductive experiences in patient interactions with providers, the patient discussions they have with their partners, and the conversations they have with their various health organizations such as insurance companies and fertility clinics. Furthermore, communication is centered in the reproductive genetic testing experience in the way results are provided, how information is exchanged and gathered, as well as the interactions they have in clinics and with providers about the genetic tests. 130 Further, the CCH perspective allowed for a deeper understanding of the social, material, and sociomaterial intersections of LGBTQ experiences regarding reproduction and reproductive genetic testing (Leonardi, 2012). Three sets of interactions were studied, communicatively centering the patient using CCH: (a) interactions with the provider, (b) interactions with the system, and (c) interactions with the body. These interactions are not meant to be mutually exclusive as the providers interactions with a patient are informed by the body of the patient and the health care system at large. Rather, these sets represent an attempt to create nuance in the positions of interaction. Initially, the communicative constitution of health assisted in examining patientprovider interactions. As participant narratives indicate, heteronormativity and power imbalances were often expressed in the patient-provider relationship. Worthington and Meyers (2003) relate that the power imbalances can dissuade patients from seeking care. Similarly, participants in this study, when faced with intolerance by a provider or an imbalanced patient-provider interaction, left the provider's office and/or sought care elsewhere. Further, Nielsen-Bohlman et al. (2004) explain that most patients are not experienced with the medical system and most patient interaction with health care is through their provider. This inexperience is communicatively constituted as patients lack knowledge concerning reproductive genetic testing. Patients are seeking out knowledge from providers as they see those physicians, nurses, and counselors as gateways to information. Second, patients communicatively constitute health in relation to their interactions with the systems of reproductive care and reproductive genetic testing. Cost of reproduction and RGT were one of the largest concerns held by participants. While 131 medical care is not resource or labor free, it is system controlled. Hospitals, clinics, governments, and insurance companies work together to set costs that implicitly price out sex and gender minorities from being able to biologically conceive a child. As this analysis indicates, these material resources (or lack thereof) influence decision-making by patients about whether to conceive a child, engage in testing, and/or terminate a pregnancy. Both the determining of price and decision-making about what to do with the body of the patient are communicatively constituted in patient interactions with the systems that control and support reproduction and RGT. Finally, the patient's body is communicatively constituted in relation to reproduction and reproductive genetic testing. That is not to say that the patient's communication makes up their body, but rather their body is affected by and in relation to communication. For example, patients experience a range of emotions from fear to relief to excitement in waiting for and receiving results. In the study of emotions concerning test results, Daley, Vamos, Wheldon, Kolar, and Baker (2015) found that negative emotions are prevalent in diseases and disorders that can affect reproduction such as the human papillomavirus (HPV). Similarly, participants in this study were waiting for and receiving test results focused on specific disorders and genetic markers that may have a substantial impact on their pregnancy or desire to have a biological child. Reproduction and RGT have profound implications on the body for both emotional and reproductive outcomes. In addition, the communicative constitution of health perspective also permitted a more focused examination of thematic discourses. Cost, choice, heteronormativity, and so forth (as constructs), all tie to one another in this project. Using CCH has drawn out 132 discursive themes that might otherwise be missed with using only a biomedical or social construction approach. It is this tying together that helps to contextualize phenomena more fully in scholarly research. Theorizing Queer Standpoint Theory The lives and experiences of sex and gender minorities are often understudied, especially in a health context. What we know about LGBTQ identity in relation to health is largely outdated, based on research that was mostly conducted over a decade ago (Eliason & Chin, 2018). Further complicating research, many studies concerning health communication often lack geographic and racial diversity (Fryer et al, 2016). These limitations to intersections of identity in scholarly research indicate that new contributions and extensions of theoretical inquiry is necessary. Although queer theory can be used to understand LGBTQ experiences, the theory is often criticized for being too abstract, too fluid, and too big to capture meaning (Burlington & Butler, 1999; Halberstam, 2005b; Isaiah Green, 2007). As Chevrette (2013) argues, the use of queer theory in specific communication contexts, such as interpersonal and family communication, is fairly uncommon due to a focus on similarity/difference. That is, queer theory may be too broad to substantiate analysis in specific subdisciplines of communication research. Queer standpoint theory offers a promising extension to queer theory in a way that orients scholarship to understanding difference. Using QST, the scholar situates queer readings through methodological, value-laden, and analytical positioning. Queer standpoint theory asks the scholar to come at research involving sex and gender minorities with a set of starting points in both data collection and data analysis. For 133 example, in asking scholars to seek out voices and narratives from LGBTQ individuals and communities, I propose that scholars begin with the standpoints of sex and gender minorities. In positioning those individuals first, researchers can gain specific insights into specific forms of discourse and power that play out in LGBTQ experiences. This is a methodological choice that I have made in this project that situates sex and gender minorities as the voice of their experience rather than relying on reports from providers who may or may not know their patient's identity is one attached to being LGBTQ. By providing an outlet for LGBTQ participants to tell their story, I avoid the fallacy of speaking for others, which can reinflict violence and misunderstandings on marginalized populations (Adams, 2005; Alcoff, 1991; Nash, 2016). Further, queer standpoint theory makes demands on scholars to analyze their data with particular epistemic and evaluative starting points. Specifically, by recognizing that knowledge is socially constructed through experience and social position, the researcher privileges an understanding that social process is important. As Adams (2005) explains, the "how" and "who" matter in understanding marginalized discourses. Moreover, queer standpoint theory situates analysis in deconstructing categories and embracing intersectionality. In prioritizing the investigation, questioning, and deconstruction of problematic categorizations, scholars can make sense of the pervasiveness of power and domination. Focusing on intersectionality also creates an opportunity to distinguish voices of difference. Intersectionality is a recognition of where difference lies and presents openings for understanding resistance strategies (Crenshaw, 1991). This study is unique in that the participant sample is particularly racial, socio-economically, sexually, and geographically diverse. This provides opportunities to study intersections of 134 experience rather than monolithic categories. For example, in this project, queer standpoint theory positions Foucault's framework of technologies and reproductive futurism to reveal power dominance and resistance strategies as well as nondominant discourses. I argue that queer standpoint theory contributes to the communication discipline by providing a set of starting points for researchers interested in the lived experiences of LGBTQ individuals. In articulating a set of principles, I hope to organize future scholarship in ways that are less abstract and more productive than queer theory. Thus, QST may be able to tell and analyze the narratives of sex and gender minorities in a more nuanced course. Differences and Similarities: A Return to Queer Standpoint Theory I preface this section by saying that much research involving LGBTQ populations relies heavily on a framework of similarity/difference. For example, in interpersonal communication research, scholarship has typically positioned sex and gender minority experiences in relation to heterosexuality (Chevrette, 2013). Similarly, in understanding the health experiences of LGBTQ individuals, there is a scholarly desire to figure out how those marginalized individuals are similar to the majority population. Queer standpoint theory prioritizes giving voice to sex and gender minorities, because their experience is in and of itself important. In establishing differences, this analysis is not attempting to place heterosexuality at the forefront, but rather is an attempt at contextualizing the reproduction and reproductive genetic testing experience of LGBTQ persons. The perspective of this project is that experiences always involve similarity and 135 difference. For example, in this analysis, no one person had the same thoughts or experiences as another individual. Similarly, even in studies using heterosexual individuals regarding reproductive testing, no individuals share the exact same experience or, in some instances, the same generalized experience (Roche & Berg, 2015; Rothwell et al., 2012). Thus, experiences, no matter what superimposed categorical grouping, are always already different. The question then becomes how do we, as scholars, provide voice to the experiences as well as learn lessons from our investigations? To answer that question, this analysis contextually argues that when thinking about LGBTQ experiences regarding reproduction that an analogy of universal design may be appropriate. Universal design is an engineering concept that structures are designed and created based on what limits or avoids segregating or stigmatizing users (De Couvreur & Goossens, 2011). For example, instead of designing stairs in a building, creating ramps so that those using wheelchairs can utilize those pathways not as a special means, but as the same ways as other nonwheelchair bound individuals. Similarly, this study seeks to understand where differences between experiences create problematic encounters for LGBTQ individuals and couples. In doing so, I argue that recommendations can be implemented as a way of making system structures more usable by a variety of populations despite and in celebration of difference. With that in mind, I contend that participants in this study had comparable experiences in the reproductive genetic testing process to heterosexual couples utilizing assisted reproductive technologies. Previous research suggests that heterosexual couples using ARTs are facing similar decisions as those being made by participants in this 136 project. For instance, Soini et al. (2006) and Hershberger et al. (2012) both found that heterosexual couples struggled with decisions about disability and choice. Their findings are similar to results in this project in that participants were also concerned with disability markers and decisions of choice. Sex and gender minorities in this study are using the same processes, writing on the same forms, and are paying the same cost as ARTutilizing heterosexual individuals and couples. These parallels make universal designs to reproductive genetic testing processes and systems possible in that they can be reformed or redesigned with inclusivity in mind. The notable differences that make a difference are in the interactions that LGBTQ patients have with their providers, the health organizations, and the health care system. Heteronormativity and intolerance play significant roles in health experiences for participants. Providers were criticized for being disconnected to patients based on their sexual identity and for inappropriately tying patient sexual identity to health concerns. Organizationally, forms and policies were underexplained or not culturally sensitive to nontraditional/nonheterosexual parenting. In experiencing the health care system, sex and gender minority patients had difficulty in securing assisted reproductive technologies. It is clear from this analysis that stigmatization of sexual identity is present in many of the reproductive and reproductive genetic testing experiences for sex and gender minorities. Clearly, most heterosexual couples do not have to experience this fear, discomfort, and anxiety of intolerance. Steps ought to be taken to reduce these intolerances by providers and improve their cultural competencies to better meet the needs of LGBTQ patients. A second key difference from ART-using heterosexual couples was in 137 consideration of infertility. Typically, heterosexual couples using assisted reproductive technologies are considering their use due to biological infertility (Gerkowicz et al., 2018; Jodar, Soler-Ventura, & Oliva, 2017). Participants in this study are primarily dealing with infertility based on social condition rather than biology. For the most part, nothing is necessarily biologically problematic with participants' ability to reproduce. This is an incredibly important implication, because trends in assisted reproductive technology scholarship have focused on multigestation pregnancies and use of those technologies to overcome biological infertility (Toth et al., 2017). If infertility is considered to be partially socially constructed, this viewpoint could open avenues to reforming costs as well as setting legal precedent to lift limits on biological reproduction from those that are potentially seen as socially undesirable. As Jensen (2016) explains, medicalization and social moralizing are sometimes mixed. It is when scholarship recognizes and deconstructs the social barriers of infertility that systemic change is possible. In contextualizing the various experiences, queer standpoint theory allows us to assess the differences of these participants not just in juxtaposition of heterosexual experience, but in relation to one another. A recognition of similarity and difference ought not be focused on how these LGBTQ couples and individuals are compared specifically to heterosexual populations. Instead, sex and gender minority voices should be heard to examine their lived experience as if we were studying a heterosexual population for the first time. In that way, similarity and difference is not a reference between minority and majority populations but within minority populations and within majority populations. 138 Practical/Clinical Implications and Recommendations While there are significant theoretical implications that contribute to the study of LGBTQ populations and health communication, this study also identifies problematic practical issues that deserve redress. While I am cautioned by authors, such as Spivak (1989) and Alcoff (1991), to not be complicit in structures of inequity to fulfill a need for productivity, I am mindful of the strategies of resistance that participants used to combat inequity and intolerance in their health care experiences. As a scholar who considers himself to be a practitioner of communication, making the communicative lives of my participants better is a priority to this project. Thus, I offer recommendations on the micro, meso, and macro level of interaction. This section first discusses the need to train providers and patients. Next, I argue that clinics, hospitals, and insurance companies can take steps to improve patient experience. Finally, I will call for system level changes to assist sex and gender minorities in engaging in reproduction and reproductive genetic testing. Training Providers and Patients As seen in this study, interactions between patient and provider can be both positive and negative. When the experience is positive, participants reported that they felt included, respected, and listened to during their health visit. When LGBTQ participants experienced the negativity of intolerance and heteronormativity, there was a severe lack of cultural competency. To contest these moments of anxiety and discomfort, I argue there is a need for increased training for both providers and patients. Provider training. Because providers control a substantial amount of power in the patient-provider communicative relationship (Beisecker, 1990; Goodyear-Smith & 139 Buetow, 2001), making sure physicians, clinicians, nurses, and counselors are trained to be tolerant of difference ought to be a critical priority. Diversity training is what is typically provided to health providers at various points during their careers. Wells et al. (2017) found that 67.7% of participants in their study had prior diversity training mostly provided by their employer. Unfortunately, most diversity trainings are underdeveloped and provide little pedagogical value due to low behavioral change rates (Parkhurst, Kayingo, & Fleming, 2017). That does not mean we should stop attempting to train health providers to be more tolerant of difference. But, it does mean that diversity and tolerance training programs should be more robust and pedagogically designed with effectiveness monitored by outcome assessments. Fleckman, Dal Corso, Ramierz, Begalieva, and Johnson (2015) argue that intercultural diversity training can be incredibly effective if programs are taken seriously and are followed up by additional training. I argue that tolerance and diversity training is the first step in improving the patientprovider relationship for LGBTQ individuals. Without tolerance, then providers have little incentive to then improve their cultural competency. A second form of training should focus on improving the cultural competency of health care providers. Cultural competency training programs seek to improve provider knowledge, provider-patient interaction skills, and provider attitudes (Beach et al., 2005; Van Den Bergh & Crisp, 2004). For LGBTQ patients, cultural competency training for providers has been shown to improve patients' experience by increasing trust and satisfaction with their provider (Eliason & Chinn, 2018). Fredricksen-Goldsen, HoyEllis, Goldsen, Emlet, and Hooyman (2014) argue that a productive way of creating these cultural competency programs is to not think of LGBTQ individuals in relation to 140 heterosexual populations, but as their own population with standing historical, cultural, and social intersections. In doing so, cultural competency training can focus on similarities and differences within LGBTQ populations to make instruction more effective (Fredricksen-Goldsen et al., 2014). These programs should become commonplace in reducing the potential malpractice of health care towards sex and gender minorities as well as cultivating patient experience. Finally, because there is a substantial amount of emotional involvement with the delivery of reproductive genetic testing results, providers (including nurses, physician assistants, counselors, etc.) should be trained to provide results in a manner that helps patients manage their emotional wellbeing. As this analysis indicates, patients are provided results with little explanation or emotional support. Although these inadequacies are, unfortunately, typical in most interactions with providers releasing genetic testing results (Baumanis, Evans, Callanan, & Susswein, 2009; Brierley et al., 2010), these data add to the growing need for more training in providing genetic screening results to patients. As Brierley et al. (2010) explain, the receiving of results is a critical time in the genetic testing process as patients are susceptible to information overload, misunderstandings of results, and are engaging in decision-making about those results. When results are unexplained, underexplained, or misexplained by providers, there are real consequences for patients who then must make decisions based on incomplete or incorrect information. For example, these decisions could include terminating a pregnancy or deciding not to have children. It is important that providers know what they are doing in both providing what information is in results as well as how they provide those results to patients. Providing training on results delivery can be an 141 effective tool in improving the reproductive genetic testing process and patient experience (Committee on Bioethics, 2013). Patient training. Although providers are typically situated with more power than patients, that does not mean that patients cannot take their health care experiences into their own hands. Patients often have power to make decisions about what providers they can seek out and if they want to continue a particular patient-provider relationship (Agrawal, Lakshminarayanan, & Kar, 2016; Beisecker, 1990; Roter & Hall, 1992). In an effort to resist toxic provider interactions involving intolerance and heteronormativity, two recommendations are necessary: train patients to be self-advocates and provide guides to LGBTQ patients who are new to assisted reproduction and reproductive genetic testing. Initially, LGBTQ patients ought to be trained as self-advocates, thus ensuring their health care interests. Wilkerson, Rybicki, Barber, and Smolenski (2011) found that LGBTQ patients want to be trained how to interact with their providers, their health organizations, and the health care system more effectively. Patient advocacy is defined as "a process or strategy consisting of a series of specific actions for preserving, representing, and/or safeguarding patients' rights, best interests, and values in the health care system" (Bu & Jezewksi, 2007, p. 104). Patient self-advocacy is when the patients direct the process and strategies to make decisions for themselves (Brashers, Haas, & Neidig, 1999). Unfortunately, patient self-advocacy is typically low for sex and gender minorities for a variety of reasons, but is mostly associated with fear of reaction from their provider and wanting to keep a low profile from homophobia (Eliason & Chinn, 2018). 142 Patient self-advocacy training programs exist for a various types of patients, including cancer survivors (Walsh-Burke & Marcusen, 1999), HIV/AIDS patients (Brashers, Haas, Klingle, & Neidig, 2000), as well as immigrants with disabilities (Li & Krishnan, 2016). These training programs have also been situated for LGBTQ patients to educate them on provider interactions, but are less prevalent than other patient advocacy programs (Wilkerson et al., 2011). This project suggests LGBTQ patients want to know more and are actively seeking information to make decisions and be fully involved in their health care interactions. Training sex and gender minority patients offers an opportunity to assist patients in resisting negative provider and system interactions, thus increasing their satisfaction and trust in treatment plans and health efficacy. Further, resources should be provided to assist sex and gender minorities as they navigate the tumultuous world of reproductive care and reproductive genetic testing. The data indicate that knowledge about reproductive genetic testing is extremely low for patients as they engage their first discussions with providers. In addition, this study's analysis shows that resources are not being provided to patients once they engage providers. I argue that guides and other resources should be provided to LGBTQ patients to help these individuals and couples navigate very new and different experiences in reproductive genetic testing and reproduction. These resources could take the form of a website, white paper, or brochure in setting expectations about what the process will look like for this specific patient population. Drawing on the experiences relayed in this study, these guides could provide narrative accounts of LGBTQ experience. These narrative approaches to resource development have been incredibly successful in other patient care contexts (see Launer, 2017) and would likely be a welcomed addition in resources to sex 143 and gender minorities journeying these processes for the first time. By training providers and patients in improving their interactions and setting expectations about the medical context, I argue that patients will have a more positive experience in seeking out reproduction and reproductive genetic testing. I recognize that training programs are difficult to implement as they require outcomes assessment and training follow-up. However, their usefulness in providing patients with a better overall experience should be worth the inconvenience of creating a useful and effective program for training. Improving Health Care Organizations Hospitals, clinics, and insurance companies also have a part to play in improving the patient experience for sex and gender minorities. The creation of organizational forms and policies lie squarely with the health care organization. For example, creating paperwork that asks for patients to denote "mother" and "father" discredit or ignore other nonnormative parenting makeups. Participants relied on a strategy of resistance by marking through problematic wording to discipline the organization's sign system. Health organizational policies and forms should be written to include the largest body of patients possible. Wording forms as "Parent 1" and "Parent 2" helps to avoid gender binaries and recognize relationships of differing sexual identities. This is a small, but important change that is easily implementable by these organizations. An additional strategy to improve patient experience is recognizing that not all training programs are created equally and not all providers will be receptive to tolerance and cultural competency training. This analysis indicates that LGBTQ participants have come to rely on lists created by health care organizations, community groups, and 144 friends/family in seeking out sex and gender minority friendly providers. Kaiser Permanente, a large insurance company and health care providing organization, has created lists of LGBTQ friendly health providers. Other health care organizations should follow suit in generating these lists to give patients more freedom in decision-making (Khalili, Leung, & Diamant, 2015). Although sex and gender minorities likely make up a smaller percentage of their patient population, health organizations should invest in steps to increase patient satisfaction with their health care encounters without regard to sexual identity. A Call for Systemic Change One of the largest concerns participants had that impacted decisions to undergo reproductive genetic testing, pursuits of assisted reproductive technologies, and considerations of sexual identity was financial costs of reproduction and RGT. Much has been written on the unnecessarily high cost of ARTs (ConceiveAbilities, 2018), reproductive genetic testing (Graf et al., 2013), and generalized health care (Pauly, 2018). From this analysis, the financial costs of reproduction and reproductive genetic testing serve as significant barriers to their use. Because assisted reproductive technologies and RGT are an increasingly important set of health considerations, the health care system and insurance companies ought to find ways to make those items cheaper or increase coverage. While I recognize that this project is unlikely to change systemic policy, this study does add another data point and call to a growing set of voices concerned with health care costs that adversely affect LGBTQ as well as general populations. 145 Limitations and Future Directions Research for this project took place over the course of a year and included participants from a variety of backgrounds, geographic locations, and experiences. As with any research project, limitations and future opportunities exist in relation to this study. In particular, this study included participants that identified as LGBTQ. In allowing all facets of nonnormative sexual identity to participate in this research project, I risk homogenizing their experiences. Although I have been careful to note similarities and differences within the group, this study could certainly be more nuanced in focusing on specific sexual identity statuses or identifications. Similarly, I have focused broadly on reproductive genetic testing rather than specific forms of genetic screening (such as prenatal genetic screening, preimplantation genetic diagnosis, or carrier screening). This limitation complicates the findings of this project as experiences were different for participants based on what type of reproductive genetic testing they were having discussions about with their provider. Future research could focus on a specific type of reproductive genetic testing to add nuance to this investigation. I chose to broaden the scope of my participants as finding individuals and couples that are LGBTQ-identifying and have had a conversation with their provider about RGT is a relatively small and difficult population to find. Although conducting research with such a specific participant population is challenging, more research should focus on seeking "inconvenient" samples. If research is only allowed to exist in spaces where participants are easy to come upon, then scholarly inquiry would only exist to examine dominant voices and experience. This sampling is an important first step in 146 understanding experiences from marginalized populations and as such care was taken to diversify the sample through national level recruitment. In addition to patient participant sampling limitations, another potential limitation to this project was the exclusion of provider experiences. Providers were limited from this study, because, as the data show, many participants do not disclose their sexual identity to their provider. It would be difficult or even erroneous to include providers who did not realize they were interacting with LGBTQ individuals and couples. As this study concerned how sex and gender minorities experience reproduction and reproductive genetic testing, provider-centered experiences would also have been misplaced. I recognize, though, that retrospective qualitative interviewing relies on participant memories of a health encounter, which could utilize provider interactions to add depth to communicative research in this area. Future research might utilize observational research examining interactions between patients and providers to get a better understanding of this important phenomenon. Moreover, the utilization of theoretical perspectives such as the communicative constitution of health and queer standpoint theory could be useful in other research contexts. For example, queer standpoint theory would be advantageous in most research involving sex and gender minority populations as a focus of research. QST would be beneficial especially in studying LGBTQ experiences in health, organizational, and interpersonal contexts. Because QST is less abstract and relatively more grounded than queer theory, scholars should find using the perspective more amenable to a queer perspective of data collection and data analysis. The communicative constitution of health would help orient other health communication contexts. In particular, research 147 examining areas where sociomaterial conditions are present would be aided by the communicative constitution of health perspective. Investigations of communication that intersect between patient and system or patient and provider, such as cancer surveillance visits or patients navigating new hospital policies, would be assisted by CCH. Additionally, by employing these frameworks, communication scholars can continue to test their usefulness and theoretical coherence. Finally, several interesting issues arose during interviews that were not necessarily related to this study, but offered opportunities for future research. In particular, one couple spoke about being part of a secret Facebook group that involved LGBTQ parents of a specific sperm donor. While I was unaware that these groups exist, sperm banks will sometimes bring together parents of children that use the same sperm donor. Future research might examine the processes of sperm donation and community building featuring a particular sperm donor. Conclusion In summary, the experiences of sex and gender minorities, as they communicatively constitute reproduction and reproductive genetic testing, are diverse, emotional, and complex. By using queer standpoint theory as well as the communicative constitution of health, I offer a set of starting points to understand this marginalized population's experiences in relation to power, knowledge, and discourse. This criticalqualitative approach allows for an accounting of dominance and resistance strategies persistent in patient experiences with providers, health care organizations, and the health care system. In addition, the framing and analysis of nondominant discourses offers scholars unique insight into experiences that are otherwise sidelined by scholarship and 148 society. The theoretical and practical/clinical implications tie the themes present in the data to sociomaterial considerations that are ever present in health communication contexts. The voices of difference situated in this project provide opportunities for reflection and additional scholarship. APPENDIX A INTERVIEW GUIDE 1. Introduction - As you know, this study is investigating how providers talk to LGBTQ patients about genetic testing. As you can imagine, many of our experiences are shaded or influenced by other experiences. Today, I'm going to start with questions about your general experiences with medical providers, then I will ask more specific questions about your pregnancy [surrogacy] (if applicable), conversations about reproductive genetic testing, as well as decision-making processes. 2. So, first, could you tell me about your previous experiences with health providers? For example, could you describe the positive and negative experiences with health providers that you have had previously? A. Could you describe how you talked to one another? How did the provider talk to you during your visit? How did you talk with the provider? B. Were you willing to disclose information that you might not have shared with other providers? Why or why not? What information did you disclose? C. Could you describe challenging or negative experiences with health providers that you have had in the past? i. What was the outcome of those experiences? ii. Did that experience cause problems or challenges in your interactions with other medical providers? What were those problems? D. Have you disclosed your sexual orientation, sexual identity, or gender identity to your medical provider? i. If yes, how did you provide that information? How did the provider respond? Was that a positive or negative experience for you? Why? ii. If no, why did you not disclose that information? 3. Let's move on to reproduction. Have you or your partner pregnant, have been pregnant, or undergoing surrogacy? 4. Could you tell me about your pregnancy [surrogacy]? (if applicable) A. When are you expecting? / When did you have your child? B. What method(s) did you use to become pregnant? For example, did you use a surrogate or in vitro fertilization? C. Could you describe any challenges or surprises about the pregnancy [surrogacy]? D. What were you most excited about in your pregnancy [surrogacy]? For example, was there things you were looking forward to? 5. Could you tell me about your interactions with medical providers during your 150 pregnancy [surrogacy]? (if applicable) A. Did you disclose your sexual orientation, sexual identity, or gender identity to your medical provider during your pregnancy [surrogacy]? i. If yes, how did you disclose that information. How did the provider respond? Was that a positive or negative experience for you? Why? ii. If no, why did you not disclose that information? B. How did you talk about your pregnancy [surrogacy] with your medical provider? i. Did you or the provider take the lead in these conversations? Could you give me an example of a conversation during a visit? ii. What topics did you cover during your visit? Was there anything surprising about the topics that you covered? For example, was there anything you weren't prepared for or found difficult to talk about? 6. Have you talked to your partner about wanting to have children? What have those conversations been like? 7. Could you tell me about what you knew of genetic testing before you underwent testing? For example, did you come in with a lot of information or did you not know much about genetic testing? A. What was your interest in genetics or genetic testing? For example, were you interested due to your family's health history or something you read in the news? B. What were you hoping to get from the tests? 8. Could you tell me about your initial conversations with your doctor regarding genetic testing? A. How did the topic of genetic testing get brought up? Did you, your partner, or the doctor bring up the topic? If you brought up testing, why was that a topic that you were interested in? B. How did the provider talk about the topic? For example, what things did your provider discuss about the topic? Did they talk about the various types of testing? Did they talk about what the tests would show? Did they discuss risk with you? C. Did the provider recommend genetic testing? D. What concerns did you have about getting genetic test done? How did you talk about those concerns to your provider? For example, did you ask questions or did you simply accept the provider's recommendation? E. Did the provider address those concerns? How did they did they address your concerns? 9. Could you tell me about the process for getting genetic testing? A. What tests or screens did they perform? B. What were the steps taken to get you tested? For example, did they draw blood? Did they take amniotic fluid? C. Was there anything challenging or surprising about your experience? D. Who underwent genetic testing? Just you or you and your partner? 10. Could you tell me about getting your test/screening results? A. Who told you about your screening results? Was it your provider or someone else? 151 B. Walk me through the conversation that you had with whoever was providing you with results. i. How did they tell you what the results were? Did they talk to you about what the results mean? ii. Did they offer counseling or other resources? If so, what resources or counseling was offered? C. How did you talk to the person providing results? For example, did you ask questions or simply listen? D. What was your results from the genetic screening? 11. If you had a positive test or positive markers, what conversations did you have with your partner? What decisions did you make by yourself or with your partner after receiving your result? How did you come to that decision specifically? 12. If you received a negative test result or no positive markers, how did you feel getting those results? For example, did you feel relief or that you were ready to move to the next step? 13. How did your sexual orientation or sexual identity affect the choice to get genetic screening? 14. Overall, would you describe this as a more positive or negative experience? Why? 15. How have structures either gotten in the way or provided you support in receiving reproductive care? 16. As we are nearing the end of the interview, is there anything you would like to add that you might want to elaborate on or talk about that we did not cover? 17. Would you be available for me to follow-up with additional questions concerning this study or for me to share data with you about the project? 18. What questions do you have for me? 19. How would you like your gift card? APPENDIX B PARTICIPANT DEMOGRAPHICS Table 1. Participant Demographics 153 APPENDIX C THEMES AND CODES Table 2. Foucault Framework of Technologies Table 3. Communicative Constitution of Reproduction 154 Table 4. 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