Justice in health care: beyond the treatment/enhancement distinction

I contend that the treatment/enhancement distinction is inherently only able to provide limited aid to arguments in bioethics concerning ethically controversial issues of resource distribution. Rather, normative assumptions about concepts such as human functioning, normality, health, and/or disease that the treatment/enhancement distinction relies on are the primary ethical motivators in distributive justice arguments that consider some medical intervention to be treatment and some medical intervention to be enhancement. Therefore, if arguments are to use the treatment/enhancement distinction to draw conclusions about justice in health care, they must make additional normative assumptions about human functioning and the role of health care. These distributive justice arguments then rely on the additional normative assumptions about human functioning and the role of health care to draw conclusions about treatment and enhancement. Arguments using the treatment/enhancement distinction have not, however, acknowledged these additional normative assumptions. In this dissertation, I make the argument that the treatment/enhancement distinction is not an independent concept. Additionally, I examine ways to cohesively fit consideration for individuals who seek medical intervention for enhancement purposes into accounts of just health care. To do this, I examine arguments concerning growth hormone therapy, performance enhancing drugs, and cognitive enhancement.

JUSTICE IN HEALTH CARE: BEYOND THE TREATMENT/ENHANCEMENT DISTINCTION by Keisha Shantel Ray 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 Philosophy The University of Utah August 2013 Copyright © Keisha Shantel Ray 2013 All Rights Reserved T h e U n i v e r s i t y o f U t a h G r a d u a t e S c h o o l STATEMENT OF DISSERTATION APPROVAL The dissertation of Keisha Shantel Ray has been approved by the following supervisory committee members: Leslie Francis , Chair 4/24/13 Date Approved Margaret Battin , Member 4/24/13 Date Approved James Tabery , Member 4/24/13 Date Approved Anya Plutynski , Member 4/24/13 Date Approved Teneille Brown , Member 4/24/13 Date Approved and by Stephen Downes , Chair of the Department of Philosophy and by Donna M. White, Interim Dean of The Graduate School. ABSTRACT I contend that the treatment/enhancement distinction is inherently only able to provide limited aid to arguments in bioethics concerning ethically controversial issues of resource distribution. Rather, normative assumptions about concepts such as human functioning, normality, health, and/or disease that the treatment/enhancement distinction relies on are the primary ethical motivators in distributive justice arguments that consider some medical intervention to be treatment and some medical intervention to be enhancement. Therefore, if arguments are to use the treatment/enhancement distinction to draw conclusions about justice in health care, they must make additional normative assumptions about human functioning and the role of health care. These distributive justice arguments then rely on the additional normative assumptions about human functioning and the role of health care to draw conclusions about treatment and enhancement. Arguments using the treatment/enhancement distinction have not, however, acknowledged these additional normative assumptions. In this dissertation, I make the argument that the treatment/enhancement distinction is not an independent concept. Additionally, I examine ways to cohesively fit consideration for individuals iv who seek medical intervention for enhancement purposes into accounts of just health care. To do this, I examine arguments concerning growth hormone therapy, performance enhancing drugs, and cognitive enhancement. TABLE OF CONTENTS ABSTRACT..........................................................................................................iii ACKNOWLEDGMENTS..................................................................................viii Chapters 1. INTRODUCTION...........................................................................................1 Dissertation Goals……………………………………………..…………….3 Summary of Chapters……………………………………….…..…………..5 PART I THE TREATMENT/ENHANCEMENT DISTINCTION………..……9 2. THE TREATMENT/ENHANCEMENT DISTINCTION REVEALED………………………………………………………….............…..10 Part 1: Boorse on Functionalist Accounts of Disease and Health…..12 Daniels' Account of Justice in "Just Health Care"……….......19 Daniels' Account of Justice in "From Chance To Choice"…...23 Daniels on the Treatment/Enhancement Distinction.…….…25 Prioritarianism…………………………………….....……..……..28 Criticisms of the Treatment/Enhancement Distinction….….33 Part 2: Case Study: Surgical Leg Amputation…..……..…...…………35 Conclusion……………………………………………………….....………. 38 3. JUSTLY DISTRIBUTING RESOURCES: A GROWTH HORMONE THERAPY CASE STUDY…………………………….………..………………..40 Availability of Growth Hormone……………………………………...….44 GHD, ISS, and the Short-Statured……………………..………………..47 Equality…………………………………….………………………………...54 Diagnosis-Based Arguments………………………………………………56 Diagnosis-Based Arguments and Clinical Trials……………………...57 Enhancement Research on Non-GHD Children……………………….61 vi Medicalizing Short Stature………………………………………………..64 Conclusion……………………………………………………………………67 Endnotes……………………………………………………………………..71 PART II WHAT IS ENHANCEMENT?...........................................................72 INTRODUCTION…………………………………………………………..73 4. SPORTS AND ENTERTAINMENT: DIFFERENCES IN PERFORMANCE ENHANCING DRUG POLICIES……………………....75 Part 1: Setting the Stage…………………………………………………..79 What Is Sport and What Is Entertainment?..........................81 Part 2: Arguments for Regulation…………..……………………………85 Fairness in Competition.………………………………………...85 "Rules of the Game"……………………………………………...86 "Norms of the Game"………….………………………………….89 "Normal Risks"……………………………………………………90 What is Human Excellence?...................................................96 Conclusion………………………………………………………..100 Endnotes……………………………………………………………………105 5. COGNITIVE ENHANCING PRACTICES: CHALLENGES TO IDENTITY AND AUTHENTICITY………………………………….………………………….107 Biological and Nonbiological Dilemmas………………………….…....109 Fast and Easy Remedies……………………………………...………….112 Prioritarianism………………………………………………………..…..117 Discussion…………………………………………………………………..120 Identity, Personhood, and Authenticity……………………………….122 Discussion…………………………………………………………………..125 Conclusion………………………………………………………………….127 6. CONCLUSION………………………………………………………………….130 Arguments………………………………………………………………….131 Natural Inequalities……..………………………….………….132 Social and Professional Environments...……….……………133 vii Acceptable and Unacceptable Risks……….......…………….134 Implications for Justice in Health Care……………………………….136 REFERENCES………………………………………………………...…………….138 ACKNOWLEDGMENTS I have a great amount of gratitude for Leslie Francis, my dissertation advisor. I am grateful for her mentorship, unwavering support and encouragement, and for being an example of how to be a strong, successful, and caring woman in academia. She has allowed me create my own path in philosophy and for this I will always be grateful. This dissertation also would not have been possible without the support and love of my mother, Kimberly, whom I love dearly. To my friends and family who have encouraged me, read drafts of my research, and helped me relieve stress, I love you all very much. To my cousins, three little blessings who taught me that sometimes you just have to go outside and play, I love you. I would also like to thank the members of my dissertation committee- Peggy Battin, Jim Tabery, Anya Plutynski, and Teneille Brown-for their helpful feedback and their encouraging words. I would also like to thank the Philosophy department, Stephen Downes, chair of the Philosophy department, the Graduate School, and the Office of Diversity at the University of Utah for encouragement and financial support. CHAPTER 1 INTRODUCTION Arguments concerning the just allocation of medical resources embody a central concern of bioethics: What are just ways to treat patients? In bioethics, a common way to ground arguments for particular distributive justice standards is to utilize what the literature calls the treatment/enhancement distinction. The treatment/enhancement distinction is a distinction between medical intervention that health care policies, medical insurance policies, and some bioethicists consider to be medically necessary, or required for health, from medical intervention that is considered to be medically unnecessary, or not required for health. Medical intervention that aims to restore, maintain, and/or improve health by preventing or curing a condition, impairment, illness, or disease is typically considered "treatment" (Buchanan et al., 2000; Colleton, 2008). Explanations of treatment may be followed by the claim that individuals who are thought to be seeking treatment ought to be prioritized over individuals who are thought to be seeking enhancement. Enhancement is typically considered to be medical intervention that aims to improve health and/or 2 human abilities beyond what is considered normal human functioning (Buchanan et al., 2000, Colleton, 2008). Advances in biotechnology create new, advanced ways in which we can enhance our lives. Along with older, more traditional practices, we now also have new and advanced practices to help us end the ways in which we physically, emotionally, and mentally suffer from our ailments, shortcomings, and inabilities. We can enhance our muscle tone, our vision, and our cognitive capabilities by using biotechnology; however, reasonable precautions about how and who is taking advantage of enhancement practices are necessary to ensure that the goals of medicine as a profession are accomplished, that patient safety is protected, and that patients are treated fairly, among other reasons that I discuss in this dissertation. The wide availability of numerous enhancement practices and the limited availability of other enhancement practices and their possible contributions to class, economic, intellectual, and physical inequalities, create the need to manage the distribution of enhancement practices. Yet we must be cautious without being overly limiting. Accounts of just health care typically favor medical intervention for individuals seeking treatment, rather than individuals seeking enhancement. The contentious nature of what medical intervention is considered treatment and what intervention is considered enhancement, however, and on what grounds this distinction is made, cannot be overlooked in determining how to implement practices that 3 ensure justice for individuals seeking treatment as well as individuals seeking enhancement. In this dissertation, I argue that the treatment/enhancement distinction is not an independent concept. Therefore, it cannot be used by distributive justice arguments that draw conclusions other than the conclusion that some uses of medical intervention are treatment and some uses of medical intervention are enhancement. Stronger arguments are beyond the scope of the treatment/enhancement distinction alone. Stronger arguments that distinguish between treatment and enhancement must first make normative claims about what is disease, what is health, what is proper human functioning, and what is the role of medicine. Throughout this dissertation, I examine functionalist, empirical, and etiological explanations of disease and health. I then show how these explanations influence conclusions that distinguish between treatment and enhancement. Dissertation Goals The principal goal of this dissertation is to present arguments that utilize the treatment/enhancement distinction to draw conclusions about what is just health care and to then show how explanations of other concepts are the main ethical motivators in these arguments. A corollary goal of this dissertation is to show the difficulty of separating many instances of treatment from enhancement; however, many theories of just health care 4 continue to separate these two types of medical intervention for purposes including distributive justice in the practice of medicine and minimization of the financial costs of health care. Although these may be legitimate reasons to distinguish between treatment and enhancement, these reasons have to be weighed against the needs of individuals and the likelihood of individuals benefiting from medical intervention. Other than utilitarian accounts of the treatment/enhancement distinction, accounts of just health care typically make the needs of individuals seeking enhancement secondary to the needs of individuals seeking treatment. Contrary to these accounts of just health care, an additional goal of this dissertation is to show that a theory of just health care must include ways to ensure justice for individuals seeking enhancement when it is difficult to clearly distinguish treatment from enhancement and the medical intervention at issue is considered to be safe. Although there may be some instances when it is easy to distinguish between treatment and enhancement, using the treatment/enhancement distinction to address medical intervention is ethically arbitrary in at least one instance-when individuals seeking what medical institutions consider to be enhancement experience the same state of being that is regarded as problematic as individuals seeking treatment. This means that as a matter of justice, the needs of some individuals seeking enhancement ought not to be prioritized below some individuals seeking treatment and individuals seeking 5 enhancement ought to at least be given consideration in accounts of just health care. Summary of Chapters This dissertation is split into two parts. In Part I, I focus specifically on the treatment/enhancement distinction and the concepts it relies on and examples of how the treatment/enhancement distinction is used in arguments concerning distributive justice. I begin with Chapter 2. In it I discuss the necessary concepts that are related to the treatment/enhancement distinction. I then discuss how these concepts are utilized by equal opportunity and prioritarian accounts of just health care. I then discuss how each account of just health care addresses the treatment/enhancement distinction and how it is used to draw conclusions about how to justly allocate medical resources. I conclude this chapter by using a case study to show the difficulties of only using the treatment/enhancement distinction to determine acceptability of intervention and how other concepts, as used by accounts of just health care, are necessary to draw conclusions in bioethics. In Chapter 3, I discuss one of the most common examples of the treatment/enhancement distinction in arguments concerning just health care: growth hormone (GH) therapy distributed to two children of equal height- ‘child GHD' with a growth hormone deficiency (GHD) as a means of 6 therapeutic intervention and GH therapy distributed to ‘child short' who is not GH deficient as a means of enhancement. In Chapter 3, I present the different treatment of these two children to demonstrate the common argument that because a normal short child uses GH for enhancing purposes, she should not be allowed to have GH treatment. There is research that claims that GH treatment can increase the adult height of children without GHD to a height that they could not have reached without medical intervention. There are also examples of children without GHD who are of the same height as children with GHD. Despite both the research and these examples, some arguments still conclude that children without GHD are not entitled to GH therapy, as a matter of just health care. I also present examples in which the treatment/enhancement distinction is not the driving force in these kinds of arguments. Instead, normative assumptions about what conditions are diseases, what is proper human functioning, and what is the proper role of health care are the normative claims that motivate what are commonly referred to as diagnosis-based arguments. I use the GH therapy example as a way to highlight a just health care dilemma-whether we should focus on the presence of disease to determine entitlement to treatment or on the shared height of individuals with and without disease when determining obligations to medically intervene. In Part II of this dissertation, I focus on justice for individuals seeking to use medical resources for what health care considers enhancement and the 7 arguments employed to support the use of enhancement practices in particular settings. I also examine ways in which individuals seek enhancement practices to attain goals or to better their lives. By examining these uses of enhancement, I show the importance of context when making decisions about what practices are considered enhancement and treatment. Although the treatment/enhancement distinction sometimes aligns with the distinction between permissible and impermissible, there are occasions when they do not align. In Chapter 4, I examine the use of performance enhancing substances in sports. I then abstract the use of these substances from the common arena of sports and examine their use in entertainment, or the performing arts. Comparing the use of performance enhancing substances in sports to their use in entertainment highlights the contextual nature of determining what practices are considered enhancement. Subsequently, this comparison also highlights other relevant information that influences judgments concerning the acceptability of performance enhancing substances, including a sense of fairness and level playing fields. In Chapter 5, I examine some of the major objections to the use of different types of biological and nonbiological cognitive enhancing practices. I contend that these objections must be addressed in relation to normally and abnormally functioning individuals because of the potential contributions to 8 social and financial advancements, and the personal growth that both types of cognitive enhancement practices can offer. In Chapter 6, I conclude this dissertation with a review of the arguments that apply to all types of enhancement practices that I discuss in this dissertation. I also discuss what these arguments imply for just health care. Lastly, I discuss the importance of focusing on the undesirable effects of disease and ailments that make individuals seeking enhancement similar to individuals seeking treatment rather than focusing on the diagnoses that separate these two groups of individuals. PART I THE TREATMENT/ENHANCEMENT DISTINCTION CHAPTER 2 THE TREATMENT/ENHANCEMENT DISTINCTION REVEALED A goal of this dissertation is to examine arguments that utilize the treatment/enhancement distinction and to reveal the other concepts that the arguments employ to make claims about what medical intervention is considered treatment or enhancement. A corollary goal is to present ways that some individuals seeking medical intervention for purposes of enhancement can have their needs met within particular accounts of just health care. My goal is not to claim that there are no differences between treatment and enhancement practices. My goal, however, is to provide a philosophical analysis of the treatment/enhancement distinction that reveals the normative assumptions about the role of health care, what conditions are considered diseases, and what states of being are considered healthy that are used in judgments about whether a medical intervention should be characterized as treatment or enhancement. This chapter is divided into two parts. In Part 1 of this chapter, I 11 present prevalent accounts of disease, health, and human functioning. I also discuss how several important nonutilitarian and egalitarian accounts of just health care employ these concepts. In Part 2, I present an example of an individual's two uses of medical resources. I then show how drawing conclusions about whether her use of medical resources can be thought of as treatment or enhancement depends on employment of the concept of normal functioning. In "Health-Care Needs and Distributive Justice," Daniels (1981) states that a theory of health care needs should capture the ways in which health care might be "special" and ought to be distributed in a just manner. Furthermore, to determine the ways in which health care might be special, we ought to compare it to other social goods that we find important and have already determined how to distribute justly. In addition, a theory of health care needs should allow us to distinguish between more important health care services and less important health care services. Our task as Daniels sees it is to provide a philosophical analysis of why health care is special and what distinctions can be made about the services health care provides (Daniels, 1985, 1981). This chapter, and my dissertation as a whole, takes on an aspect of this task. My first step is a philosophical analysis of accounts of health care and what we want accounts of health care to do for us. In this chapter, I commonly refer to "accounts of just health care" to include a wide range of claims. Where distinctions among these claims are 12 needed for my argument, these distinctions are made. As a general matter, I use "accounts of just health care" to refer to a family of claims about the duties of health care personnel to properly distribute their time, knowledge, services, and resources to individuals and who should be financially responsible for the distribution of these goods. "Accounts of just health care" will also refer to general accounts about just (or proper) ways to treat individuals and to particular claims about just (or proper) ways to treat individuals, which are both used as a basis for how medical institutions ought to treat individuals. For instance, an account of just health care may state that health care personnel are obligated to prioritize individuals who desire what their profession or institution considers to be treatment before individuals who desire what their profession or institution considers to be enhancement based on conceptions of effective hospital management. Based on the criteria for a proper philosophical analysis of health care theories set forth by Daniels (1981), this chapter explores how various theories meet his criteria and expands the requirements for what we want a theory of health care to do for us. Part 1: Boorse on Functionalist Accounts of Disease and Health Theories of just health care often rely upon an account of normal in which normal is an evaluative concept explained in terms of cultural or ethical norms (Wachbroit, 1994). Theories of health care also often rely upon 13 more prominent accounts of health and disease in which both are defined in terms of human function. For example, etiological explanations of function state that the proper function of a part is explained by what actions the part was naturally selected to perform (Millikan, 1989; Wright, 1973). Given this etiological approach, when the body, or its parts, are performing the actions that it was naturally selected to perform, it can be thought of as healthy and when the body is not performing the actions it was naturally selected to perform, it can be thought of as diseased. This would be the case when a heart is not properly pumping blood, the action it is thought to be designed to perform. In this section, I will discuss a functionalist account of health and disease as described by Boorse (1975, 1977). I focus on Boorse because the treatment/enhancement distinction, which is the primary target of this dissertation, operates in just health care arguments as a tool to designate individuals' levels of function and then to separate individuals based on that level of functioning and lastly to determine obligations to treat based on those designations. Then I will discuss what relying on Boorse's account of health and disease means for the treatment/enhancement distinction. In his functionalist accounts of health and disease, Boorse (1975, 1977) uses explanations of normality and proper functioning to distinguish disease from health. According to Boorse (1975, 1977), the body has goal-oriented parts and when those parts are functioning normally, or according to their 14 biological function as determined by factors unique to the individual such as age or sex, the body can be thought of as being healthy. Conversely, when the body or the parts that comprise it deviate from normal functioning, the body or its parts can be thought to have a disease. Under Boorse's theory of health and disease it seems plausible that a part of the body can function abnormally without the entire body of the individual and the body's other parts being thought to be unhealthy. Boorse's account of health, simply put, is that health is proper functioning and disease is abnormal functioning. This is a very simplistic view; however, it is at the minimum a way to distinguish between cases when it is easy to distinguish between treatment and enhancement. That is, Boorse's view can be used to make the distinction when there are few factors that would lead health care personnel to believe that an individual is using health care resources to function beyond normal or for intervention that is medically unnecessary. Benditt (2007) gives a more recent account of disease that is similar to Boorse's account of disease. Benditt's account is grounded in an idea of normal function in which body parts have particular functions and these functions have a range of activity. When the body does not function within a particular range, the body cannot complete its biological function, making the body biologically abnormal, or diseased. As Benditt states, some scholars like Alice Dreger (1998) and Anita Silvers (1998) worry that defining disease as 15 abnormal functioning can easily turn any difference in function into a disease. A further concern is that defining disease as abnormal functioning leads to the assumption that any time an individual is functioning differently, we assume that she must be treated and her functioning restored to normal. Explaining disease in terms of abnormality and in turn health in terms of normality, however, is not problematic in Benditt's view (2007). He contends that Dreger and Silvers' concerns only arise when from "abnormal" we draw the inference "must be fixed." Although Benditt (2007) concludes that explanations of normal ought not to determine the role of medicine, he acknowledges that they have been taken to do so in some cases. For example, he acknowledges the argument that explanations of normal ought to determine the outer boundaries of medicine, in particular the argument that enhancements are beyond the scope of medicine's obligations. Additionally, Benditt (2007) concludes that explanations of normal may be useful in some areas of life, such as creating the boundaries of athletic competitions within which athletes must compete. In athletic competitions, normal refers to athletes whose abilities are not aided by enhancements, thus making competition interesting to audiences. In athletic competitions, athletes who are not enhanced by drugs ensures the type of competition that spectators want to see. Although Benditt (2007) sees a place for normal in athletic competitions, he remains unconvinced that explanations of normal ought to 16 determine the boundaries of medicine and the obligations of medical personnel. According to Schwartz (2007), functionalist accounts of human functioning that invoke the concept of normality and abnormality must address what he refers to as the "line drawing problem." The "line drawing problem" is questioning where to draw the line between low normal function and dysfunction. Functionalist accounts of human functioning do not adequately address this problem because they rely on a conceptual analysis approach to explaining the differences between normal and abnormal; however, a conceptual analysis focuses on unreliable and continuously changing lingual norms (Schwartz, 2007). Schwartz (2007) proposes his own solution to the "line drawing problem" known as the "frequency and negative consequences approach" (FNC). This approach draws a line between low normal function and dysfunction based on a statistical analysis of the level of functioning in a reference class and the negative consequences that result from a particular level of functioning. Schwartz represents one such account of normal functioning that can respond to the line-drawing problem, a statistical approach. This section has presented several selected accounts of common concepts in bioethics, including disease, health, normality, and human functioning. Some accounts focus on the function that body parts were designed to perform, while other accounts focus on how individual functioning deviates 17 from human functioning that is typically found in the general population. When the treatment/enhancement distinction is employed by just health care arguments, it is frequently used to determine health care's personnel's obligations to patients. However, to employ the treatment/enhancement distinction, accounts of who are healthy and who are unhealthy must first be employed. This is what accounts of health and disease, like those given by Boorse, do for just health care arguments. Relying on this brief sketch of Boorse's accounts of health and disease, the treatment/enhancement distinction becomes a distinction between ameliorating disease and improving upon an already healthy body. Boorse's account of health and disease supports this traditional explanation of the treatment/enhancement distinction; however, as this dissertation argues, that does not lead to the conclusion that individuals without disease or ailments ought not to use enhancement practices. Just as Boorse (1975, 1977) states that an abnormality of function does not necessitate treatment, normality of function ought not to be the only basis for denial of treatment. Throughout the main chapters of this dissertation, I examine arguments that utilize a functionalist account of health and disease, like Boorse's account, to draw conclusions about treatment and enhancement. I then argue that functionalist accounts exclude individuals from medical intervention who may have a legitimate claim to resources based on other factors such as social disadvantages. 18 In the next section, I canvass several accounts of just health care that employ Boorse's functionalist account of health and disease to distinguish between health and disease. The treatment/enhancement distinction is understood differently in different theories of justice, depending on the conclusions they are used to draw. For example, Daniels' (1985, 2001) account of just health care is defined in terms of providing care that affords individuals the greatest opportunity to experience the normal opportunity range for the society in which they live over an ordinary life span (Daniels' account of normal opportunity range includes the necessity for social goods such as education, food, and adequate housing, and other goods; although I mention this aspect of Daniels' account, my priority is the contribution that health care makes to normal opportunity range). Daniels' account of just health care relies heavily on accounts of normality when understanding the normal opportunity range as a basis for resource distribution. In the discussion that follows, I also include a prioritarian account of just health care that takes justice in distribution to begin with the worst off. Important versions of this account also rely on accounts of disease, health, and normal functioning to make decisions about how to justly distribute resources. These are only two of the nonutilitarian accounts in the literature; however, they are prominent, frequently cited accounts of how health care institutions and personnel ought to treat 19 individuals. In addition, important versions of the accounts make central use of the treatment/enhancement distinction, my target in this dissertation. Daniels' Account of Justice in "Just Health Care" In his well-known account of "Just Health Care" (1985), Norman Daniels utilizes Boorse's account of disease and health to draw conclusions about what justice requires in health care. Daniels' account of just health care relies on the idea that there is a normal range of opportunities for individuals in a given society. The normal range of opportunities consists of those opportunities, or life plans, that are available to individuals with ordinary talents (Daniels, 1985). Health care is a special kind of good because of its potential to support or hinder our range of opportunities. Institutions that provide adequate and efficient health care can keep individuals healthy and can treat us when we are unhealthy. Since health is necessary for many of life's activities, health care institutions and their resources are desirable; however, on occasion the demand for these resources outweigh the supply of these resources. According to Daniels (1985), because of health care's special relationship with our opportunities, we are required to find a way to justly distribute its limited resources to individuals. These resources include interventions, goods, and the personnel that provide these goods and interventions. 20 Daniels (1985) continues his argument with a functionalist account of how health care institutions can protect our normal range of opportunities. Health care institutions can protect our normal range of opportunities by maintaining or restoring a normal level of species-typical functioning. Species-typical functioning is a range of bodily functioning that is thought to be normal among humans and by which the normality or abnormality of functioning of individuals can be judged. Relying on the concept of species-typical functioning allows us to determine what justice in health care requires, which is ensuring a normal range of opportunity for species-typical functioning individuals. Not all opportunities are available to each of us. Key characteristics of a particular society will influence what opportunities are available as different societies have different ranges of opportunities based on their resources. In Daniels' (1985b) view, the principles of justice that regulate a society's basic institutions also affect available opportunities (1985b). Factors such as education and wealth are also factors that can limit opportunities. Disease is another factor that can limit the range of opportunities that are open to particular individuals given their skills and talents (Daniels 1985b). Health care institutions, however, can limit the effects that disease has on these opportunities. Again, this is why health care is special and requires accounts of what individuals ought to use its resources and how they are to use them. 21 Daniels' (1985, 1985b) initial accounts of just health care include the idea that disease threatens opportunity, so as a matter of justice, health care ought to rectify the ways in which disease hinders access to the normal range of opportunities for some individuals (Daniels 1985b). Daniels (1985b) is careful to note that his account is not based on leveling up or down-he is not advocating that we attempt to equalize everyone's abilities or opportunities. Instead, Daniels (1985b) states that his account of just health care is that everyone's opportunities should equally not be adversely affected by disease when disease can be corrected. Ultimately, Daniels (1985b) concludes that if it is a matter of justice to maintain equality of opportunity, then equality of opportunity, as a principle of justice, must govern the very institutions whose distribution of resources affect our opportunities, which includes health care institutions. The idea that health care is special because of its effects on our opportunities, defined in terms of species-typical functioning, spans both Daniels' earlier (ca. 1985) and later accounts of just health care. Daniels' later accounts of justice in health care, however, expand on this idea and create an account of just health care that is more inclusive in what it requires. In what follows, I use the example of genetic enhancement to demonstrate the evolution of Daniels' account of just health care. In "Just Health Care" (1985), Daniels utilizes Boorse's functionalist account of disease and health to state that as a matter of justice, the primary 22 duty of health care institutions is to maintain or restore individuals to species-typical functioning and to ameliorate disease in so far as it causes individuals to deviate from normal functioning, which in turn limits their opportunities. Natural inequalities that do not adversely impact our species-typical functioning, however, are beyond the scope of health care institutions' duties. For example, as a requirement of justice health care, institutions would be required to ameliorate congenital brain disorders, such as megalencephaly, a condition in which individuals have an abnormally enlarged brain. For some individuals, it is a genetic disorder that can lessen intellectual capabilities. Although some individuals with megalencephaly may not have severely limited intellectual capabilities, if those intellectual capabilities are below normal species-typical functioning, then they ought to be ameliorated by health care's resources to the extent possible. If individuals with megalencephaly have intellectual capabilities that are lessened but not below normal species-typical functioning, however, then health care institutions are not obligated to intervene. This may be the case when individuals with megalencephaly have a fairly good memory, but do not have an exceptional memory that many other individuals desire and indeed may have. It is normal species functioning to have an average memory and it is beyond normal species functioning to have an exceptional memory; therefore, it is not the responsibility of health care institutions to restore or maintain 23 exceptional memory skills. Next, I place this example within the context of Daniels' more recent accounts of just health care. Daniels' Account of Justice in "From Chance to Choice" "From Chance to Choice" (Buchanan et al., 2001) adopts Daniels' idea that as a matter of justice, health care institutions should remedy the ways in which disease hinders opportunities, in which disease is defined in terms of abnormal species-typical functioning. As many diseases have a known genetic component, health care institutions must be concerned with genetic intervention as well. Genetic intervention is a means to ameliorate disease and therefore a means to ensure individuals' normal range of opportunities. New technology that allows us to genetically alter human life forces us to expand the types of ethical questions that we must ask concerning genetic intervention. Concerns associated with genetic intervention also include the problem of natural inequalities. Buchanan and others (2001) canvass different responses to whether natural inequalities ought to be altered as a concern of justice, including the equality of opportunity view endorsed by Daniels and an egalitarian view. They ultimately endorse a moderate view that encompasses aspects of both equality of opportunity views and egalitarian views that converge to create the idea of a "genetic decent minimum." Their account of just health care does not include the strict elimination of all natural inequalities. Rather, their 24 account of just health care, with the idea of "genetic decent minimum" requires that we use genetic intervention to ameliorate disease and to ameliorate severe disabilities that adversely affect our normal range of opportunities. Additionally, if there are genetic conditions that are not considered diseases, yet adversely affect the ability to enjoy the normal range of opportunities, then genetic intervention for practices other than therapeutic intervention is an acceptable use of health care's resources. Referring back to the example of megalencephaly, Daniels' later accounts of just health care offer a different justification for medical intervention. Based on an opportunities approach, individuals with megalencephaly who are functioning below normal species-typical functioning ought to be treated by health care institutions. For example, genetic intervention is acceptable because abnormal functioning is a threat to individuals' with megalencephaly ability to live the kinds of lives that they want to live. In the instance that individuals with megalencephaly have only a fairly good memory, then genetic enhancement is permissible within Daniels' account of just health care presented in "From Chance to Choice" (Buchanan et al., 2001). Daniels' later accounts of just health care are thus much more inclusive than the earlier accounts. This means that more instances of genetic intervention are acceptable and that in some instances, health care's resources may be used to raise individuals beyond normal functioning. This use of health care's resources is justified, based on the idea 25 that abnormal functioning limits opportunities that the individual would otherwise have if it were not for disease. This section is not meant to be an exegesis of Daniels' account of just health care, although it does give us a starting point for how Daniels' extensive work deals with the treatment/enhancement distinction. Next, I give a synopsis of how the treatment/enhancement distinction functions in Daniels' account of just health care. Daniels on the Treatment/Enhancement Distinction One of Daniels' requirements for a proper theory of just health care is that it must distinguish between more important and less important health care services (2001). Daniels meets this requirement by utilizing the treatment/enhancement distinction in both his early and later accounts of just health care. Treatment is typically thought of as medical intervention meant to maintain, improve, or restore health or prevent conditions not conducive to health, with health considered to be species-typical functioning. Enhancement is typically thought to be medical intervention used to improve health beyond species-typical functioning (Daniels, 2000). A notable difference between Daniels' earlier and later accounts of just health care is that in the later accounts, Daniels presents a much less stringent account of 26 the treatment/enhancement distinction and its role in addressing the distribution of medical interventions. In earlier accounts of just health care, Daniels prioritizes treatment before enhancement because treating medical conditions that cause an individual to deviate from species-typical functioning is not conducive to equal opportunities (1985). In the instance of enhancement, however, typically individuals have already achieved species-typical functioning and already have access to a normal range of opportunities. In more recent accounts of just health care, however, Daniels (2000, 2001) admits that the treatment/enhancement distinction understood as species-typical functioning matches at best incompletely with achievement of the normal opportunity range. If the focus is opportunity, health care personnel may not provide some treatment practices and it may provide some enhancement practices. This part of Daniels' account of the treatment/enhancement distinction aligns with his claim that sometimes we are obligated to use health care services to change how skills and talents are distributed. Considering medical intervention to be treatment is not a sufficient condition for that intervention to be provided by health care personnel since the needs of individuals surpass medicine's resources. Disease may be the primary reason to treat individuals; however, there are reasons to offer nontherapeutic or enhancement services including for purposes such as ensuring opportunities. Daniels gives the example of nontherapeutic abortion. This intervention is not provided on the 27 basis that it will improve individual functioning, but it may be necessary, to safeguard women's rights. Thus, Daniels concludes that in the name of just health care, health care institutions may provide abortions, a nontherapeutic intervention, to women (Daniels 2000, 2001). According to Daniels' (Buchanan et. al, 2000; Daniels 1985, 2000) account of just health care, the treatment/enhancement distinction can only play a limited role in health care decisions. If treating some diseases can take priority over some enhancements, according to Daniel's account of just health care, yet there are some instances when health care personnel are obligated to provide enhancement practices and not treatment practices, then this implies that there are some instances when individuals seeking enhancement should have the same consideration as individuals seeking treatment. Drawing further conclusions from Daniels' (1985, 2000) account of just health care, maintaining species-typical functioning for the sake of maintaining equality of opportunity, health care personnel may be required to offer some medical intervention that may be considered enhancement. For instance, health care personnel may be required to provide growth hormone therapy for short-statured children who have a normal functioning endocrine system and whose short stature is not the result of disease if short stature affects their range of opportunities (see Chapter 3). Next, I examine an alternative to Daniels' account of just health care-prioritarianism. 28 Prioritarianism The view that I focus on in this dissertation is the view endorsed by Richard Arneson (2000) called "responsibility-catering prioritarianism" (prioritarianism). Prioritarianism, as a matter of justice, distributes resources by prioritizing the wellbeing of individuals that are the least well off over individuals that are better off. Wellbeing can be defined in terms of general wellbeing, economic wellbeing and/or access to resources (Arneson 2010). Prioritarianism has been criticized for being a leveling down principle that sets the unattainable goal of strict equality. Putting an analysis of the criticisms aside, it will suffice for my purposes here to say that in response to the criticisms like the leveling down criticism, prioritarians have adopted an equality of opportunity account of justice; the goal is not equality of outcomes but rather that individuals have an equal opportunity to obtain desirable resources or that we have fair shares of total resources (Anderson, 1999). Next, I apply prioritarians' response to leveling down objections within the context of justly distributing medical resources. Richard Arneson (2000, 2010) is an example of a prioritarian who prioritizes the worst off when distributing resources; however, prioritizing the worst off requires us to identify who is the worst off. One of the many ways to determine the worst off and subsequently who ought to have access to resources is to determine who has a disease and who does not. For 29 instance, mitigating the effects of disease is a concern for prioritarians when disease depletes wellbeing (Arneson, 2010). If having a disease makes someone more worse off than someone who does not have a disease, then it would follow that according to a prioritarian that utilizes the typical view of the treatment/enhancement distinction, priority is given to individuals who use health care's resources to mitigate the effects of disease, or for treatment purposes. Individuals who use health care's resources to mitigate the effects of unwanted conditions that are not diseases, say rhinoplasty for an undiseased distorted nose, are prioritized after individuals seeking treatment. If prioritarians needed another way to determine the worst off, they could take a queue from luck egalitarians and concede that there is a distinction between instances when we are culpable for the disadvantages spurred by disease, option luck, and instances when we are not culpable for the disadvantages spurred by disease, brute luck. A prioritarian advocating this argument, such as Arneson (2010), may state that individuals who are not culpable for their disease and thus their disadvantages are more worst off then individuals who are culpable for their disease and thus their disadvantages, giving the former priority to medical resources. This would be like saying that individuals disadvantaged by congenital disorders are prioritized before individuals disadvantaged by their choice to partake in intravenous drug use or choosing to smoke cigarettes (assuming that these 30 are our decisions to make). One way to determine the requirements of justice within a prioritarian account of distributive justice is to utilize the treatment/enhancement distinction. However, Shlomi Segall (2010) gives an example of a prioritarian account of distributive justice in health care that does not rely on the treatment/enhancement distinction. On his view, medical intervention is considered to be just when conditions are unwanted, reasonably unavoidable, and disadvantageous, and are the result of social or natural circumstances. Although Segall prioritizes the least well off, in Segall's prioritarian account, the least well off are not necessarily always the individuals who use medical resources for intervention purposes as an unwanted condition that is not a disease can be considered a disadvantage. According to Segall (2010), just health care requires us to treat pathologies and deviations from normal species functioning; however, some health deficits are not matters of pathologies and are not deviations from normal species functioning, yet a system of just health care ought to treat these conditions, even if they are considered enhancements. This account of just health care requires the moral irrelevance of the treatment/enhancement distinction for the sake of ensuring equality. Under Segall's (2010) account of just health care, individuals seeking treatment do not necessarily always take priority over individuals seeking enhancement, by virtue of using medical resources for treatment. Rather, 31 prioritarianism focuses on how disadvantageous conditions and the effects of those conditions make individuals the worst off. For example, to demonstrate the differences between Segall's (2010) prioritarian account of justice and Daniels' functionalist account of justice, Segall (2010) employs the commonly used example of significantly short-statured children. One child is extremely short because she has short parents while another child is extremely short because of a growth hormone deficiency. If there are disadvantages associated with being extremely short then relying on Segall's account of justice, we ought to treat short children with a disease that causes their short stature and children that do not have a disease but are equally short in the same manner, all other things being equal (Segall, 2010). This example demonstrates a corollary claim in Segall's prioritarian account, which is that a lack of disease is not always an understood, unacceptable use of medical interventions. In the instance that individuals are considered the worst off, determined by their poor health, whether they are seeking treatment or enhancement is irrelevant to the acceptability of intervention. Placing the example of the short -tatured children within Daniels' functionalist account of just health care, the growth hormone deficient child is prioritized before the short child who is not growth hormone deficient because the former has a disease and the latter does not. Daniels' account of just health care also calls for us to examine whether the condition prohibits 32 individuals' ability to have a normal range of opportunities (Daniels, 1985). So if it were determined that being significantly shorter than the rest of the population hinders her normal range of opportunities in ways such as limiting career prospects or her limited ability to function in a society that does not cater to the extremely short, then the child that is not growth hormone deficient would be entitled to growth hormone treatment. If extreme short stature, however, does not hinder normal range of opportunities, then neither a short child nor a growth hormone deficient child would be entitled to treatment on Daniels' view (2001). As Daniels' (2001) states, issues of distributive justice are judged against the backdrop of the society that individuals live in. This means that we have to take into account individuals' ability to experience a normal range of opportunities, like that of the extremely short, given the society that they live in. Next, I examine criticisms of arguments that distinguish between treatment and enhancement for whatever purpose, whether it is to ensure opportunities or to prioritize the least well off. The following criticisms are raised by Daniels' himself and are meant to contribute to the philosophical analysis of the treatment/enhancement distinction in this dissertation as a whole. 33 Criticisms of the Treatment/Enhancement Distinction Daniels' earlier accounts of just health care allow room for the treatment/enhancement distinction to have a bigger role in how medical resources are allocated, namely that the treatment/enhancement distinction, in more instances than not, matches obligatory and nonobligatory intervention by health care institutions (1985). Daniels' later accounts of just health care allow room for the treatment/enhancement distinction to have less of a role in allocation of medical resources (Daniels, 2000). Daniels raises two objections to the treatment/enhancement distinction that are inspired by cases where it is difficult to distinguish between treatment and enhancement. The first objection is that the treatment/enhancement distinction does not possess the moral significance that is often associated with its use. Concerning insurance practices, sometimes we are compelled to insure ailments that are not diseases just as we are compelled to fund diseases. Subsequently, the treatment/enhancement distinction does not always match up perfectly with our moral obligations. The second objection to the treatment/enhancement distinction that Daniels (2000) raises is that it is our values that limit the kinds of conditions that are considered to be diseases. Furthermore when we inconsistently apply these value judgments when distributing resources, distinctions between treatment and enhancement seem arbitrary. The treatment/enhancement distinction is then not a biological distinction but a 34 distinction between values. Therefore, the treatment/enhancement distinction cannot be used to draw moral boundaries because we created the values that the treatment/enhancement distinction relies upon. The central concern behind both objections is the moral significance that is associated with the treatment/enhancement distinction and the moral implications that are drawn from it. To respond to these objections, we have to accept that the treatment/enhancement distinction is 1) a normative distinction with imperfect application to some cases; 2) it relies on values that are often times socially and not always biologically created; and 3) that these values, represented as explanations of disease, health, human functioning, and normality, are an inescapable consequence of distributing limited resources whose supply does not meet the demand for those resources. Lastly, when individuals experience the same problematic effects of disease, the treatment/enhancement distinction should matter less when determining who is entitled to medical intervention. I suspect that this response to the two objections raised by Daniels" (2000) may be difficult to accept because it relies on the idea that the second objection is not so much as an objection but a reality of any theory of distributive justice in health care, not just a reality of the treatment/enhancement distinction. My response also relies on the idea that the concepts that the treatment/enhancement distinction relies on are ultimately normative. These ideas, which are the foundation of my response 35 in this chapter and the foundation of this entire dissertation have to be accepted if the treatment/enhancement distinction is an option for an appropriate theory of distributive justice in health care. In the next section I give an example that illustrates my analysis of the treatment/enhancement distinction. Part 2: Case Study: Surgical Leg Amputation In this section, I present two accounts of an example of a health care dilemma. Together, these accounts help to demonstrate that the treatment/enhancement distinction is not an independent concept. They also demonstrate that the treatment/enhancement distinction cannot be used to draw conclusions about medical intervention without relying on other concepts, such as disease and normality. First is the case of Jane, a young, professional sprinter. Jane is involved in a very bad car accident that damages both of her legs. To save her life, physicians recommend that she consent to amputating both of her legs. Physicians inform Jane that because her legs will be amputated below the knee she will be a candidate for prosthetic legs. Taking this into account, Jane consents to surgery. After her surgery and some recovery time, Jane is fitted with prosthetics. As an athlete for most of her life, Jane looks for a sport that she can compete in given her recent leg amputations. She discovers a love for distance running and begins to compete in multiple marathons. 36 Although Jane cannot participate in some of the sports that she enjoyed before her leg amputation anymore, she enjoys the ability to competitively run that her prosthetic legs give her. In the previous example, Jane transitions from normal human functioning (e.g., possessing both legs) to abnormal human functioning (requiring surgery to remove her legs), and then back to gaining some sense of normal capabilities, e.g., being able to walk again by the artificial means of prosthetics. Contextually speaking, the practice of leg amputation is a therapeutic intervention rather than enhancement because amputating Jane's legs is for the purpose of restoring health and not for the sole purpose of being a better running competitor. When determining whether Jane's medical intervention is an example of treatment or enhancement, we have to turn to the concept of normality to draw conclusions. Comparing the normality of her functioning before medical intervention to the abnormality of her functioning, yet normal capabilities, after medical intervention allows us to draw conclusions about the acceptability of intervention. For example, before the car accident, Jane experienced normal functioning; however, the car accident eliminated this functioning. Medical intervention was required to give her some resemblance of normal functioning. If we can determine that the car accident was of no fault of her own and that not having the ability to walk resulted in less access to a normal range of opportunities, then allowing Jane to have prosthetic legs 37 would be acceptable under both prioritarian and opportunity accounts of just health care. Consider a second scenario in which Jane is a professional sprinter but has never been in a car accident. She has always had an average sprinting career but longed to break track records and elevate her career. After reading an article about the capabilities of technologically advanced leg prosthetics, Jane decides to have her legs amputated so that she can get prosthetics legs and use the technology to advance her career. In this example, Jane's legs are not functioning abnormally, nor is any other part of her body, and assumingly her mind, diseased in any relevant way. Amputating Jane's legs is not to ameliorate the results of a traumatic injury or to correct functioning that is below normal functioning; rather leg amputation is spurred by Jane's desire to function beyond normal functioning and her desire for a better career. Relying on the concept of normality, in this scenario medical intervention is likely to be considered enhancement because Jane does not have a disease, she is functioning at a species-typical level, and amputating her legs is not the result of a significant disadvantageous condition. One conclusion to draw from examining both scenarios is that the treatment/enhancement distinction cannot stand on its own. In scenarios such as ones similar to the case of amputating Jane's legs, we have to utilize accounts of proper human functioning, normality, and disease. This is the 38 case when determining Jane's level of functioning before and after medical intervention and when determining the reasons for medical intervention. For example, in the first scenario, based on functionalist accounts of normality, amputating Jane's legs and fitting her for prostheses would be considered therapeutic intervention to restore a physical capability-walking- that she lost as the result of injury. Together these two examples support the overall goal of this chapter, and dissertation-without concepts like normality and disease, the treatment/enhancement distinction would be useless to accounts of just health care. This includes concerns about who gets to use medical resources, for what purposes, and who ought to pay for the use of medical resource. Conclusion In this chapter, I presented some of the most common explanations of normality, health, disease, and human functioning. I then presented some frequently utilized accounts of just health care that rely on these concepts, including the treatment/enhancement distinction. Together, the explanations of these concepts and accounts of just health care show that the theoretical and practical approaches for determining how health care should be distributed are complex and consist of a series of intricate and interrelated supporting claims. Ultimately, decisions about justice in health care are normative and are contingent on normative accounts of the role of health care 39 institutions and their role in treating diseases and maintaining health. Concerning the use of the treatment/enhancement distinction, the focus of this chapter, we can address concerns about using health care's resources for enhancement practices by acknowledging the limitations of the treatment/enhancement distinction and using it as more of a guide to distributive justice, rather than a stringent method of practicing medicine. CHAPTER 3 JUSTLY DISTRIBUTING RESOURCES: A GROWTH HORMONE THERAPY CASE STUDY This chapter uses the common dilemma of determining how to justly distribute growth hormone (GH) therapy as a model for how the treatment/enhancement distinction is used in judgments about distribution of resources. Specifically, this chapter explores arguments that utilize the concepts treatment and enhancement to draw ethical distinctions between the use of GH therapy for individuals of short stature diagnosed with growth hormone deficiency (GHD) and children who do not have GHD, but are of height regarded as equally problematic. I focus on children with GHD and children with Idiopathic Short Stature (ISS), or children whose severe short stature is not the result of GHD, but of an unknown cause. Norman Daniels (1985) offers a distributive justice dilemma with the frequently cited example of two children of equally severe short stature- one child's short stature is the result of GHD while the other child's short stature 41 is the result of an unknown cause or is the biological result of having short parents. The example is often used to illustrate the basic moral quandary in bioethics: "What are (if any) health care institutions' obligations to the sick and to the well?" The treatment/enhancement distinction is an attempt to address this moral quandary. The treatment/enhancement distinction is commonly used to argue that health care personnel are only obligated to intervene on the behalf of the unwell, making the intervention a therapeutic intervention, rather than an enhancement practice. This argument, however, leaves out the possibility that individuals who do not meet standards of normal functioning may also suffer the effects of severe short stature and can benefit from medical intervention. In this chapter, I will use this basic dilemma in bioethics, and the use of the treatment/enhancement distinction as a response to this dilemma to address health care institutions' obligation to children with and without GHD. I will also discuss how risks of intervention play a factor when using the treatment/enhancement distinction to respond to dilemmas. I contend that when we are presented with issues of distributive justice, the ethical work in these arguments is done by normative explanations of common concepts in bioethics. Arguments cannot utilize the treatment/enhancement distinction without also utilizing normative explanations of the role of health care, disease, health, and proper human functioning. These judgments then play an essential role in determining 42 when intervention is considered treatment or enhancement and when intervention is permissible. The treatment/enhancement distinction does not always perfectly distinguish between permissibility and impermissibility of medical intervention. As I contend in this chapter, the treatment/enhancement distinction only has limited significance for arguments concerning distributive justice. This means that considering some uses of GH therapy enhancement does not necessarily mean that they are impermissible. Therefore, when individuals who are considered to be biologically functioning normally experience the same undesirable and disadvantageous effects of a condition shared by an individual who is not biologically functioning normally, the treatment/enhancement distinction becomes a less than appropriate decision-making tool and focus should be transferred to the effects of the condition. Arguments that disregard the similar height between short-statured, GHD individuals and individuals with ISS and instead focus on whether the individuals have a disease to determine permissibility of medical intervention are typically referred to as diagnosis-based arguments. Diagnosis-based arguments also typically state that non-GHD individuals should not undergo GH therapy because they do not have a disease, making their use of medical intervention enhancement, rather than treatment. 43 A corollary of diagnosis-based arguments is that individuals who are thought to be seeking treatment have priority in the distribution of GH therapy over individuals thought to be seeking enhancement. A conclusion that may be thought to follow from this line of thinking is that individuals who seek treatment are allowed first priority at utilizing medical resources because their needs are in response to what is considered to be a legitimate medical ailment. In contrast, individuals who seek enhancement are prioritized after individuals seeking treatment because their needs are considered to be non-medically imperative. However, this chapter argues that the presence of disease does not always lead to the assumption that the individual must be treated and the absence of disease does not always lead to the assumption that the individual must not be treated. Although the GHD/ISS example concerns treatment and enhancement, how we respond to the example has bigger implications for how health care institutions maintain justice for individuals seeking enhancement, namely individuals with troubling bodily characteristics, but lack a diagnosable disability or disease. Using "disease" as a basis for distributive justice is an acceptable way to ground arguments for health care's obligation to treat but its use can also unjustly ignore the needs of those seeking enhancement but suffer from a disability. This means that in some instances, maintaining justice for those seeking enhancement is just as important as maintaining justice for those seeking treatment. My goal here is to demonstrate such an 44 example and how the example can be a guide for how health care can ensure justice for those seeking enhancement. In Part 1 of this chapter, I give the relevant background information about GH and GH therapy. In Part 2, I give examples of diagnosis-based arguments that seemingly rely on the treatment/enhancement distinction to recommend GH therapy only for children with GHD. I then show how "disease" as dysfunction and medicine's goal of remedying dysfunction are the motivating concepts in these arguments, not the "treatment/enhancement distinction." I conclude by showing how examples comparing GHD and ISS represent an unclear case for justice in health care if justice is viewed as medicine's obligation to treat the diseased or disabled and an indirect contribution to maintaining fair equality of opportunity. Availability of Growth Hormone The change in supply of HGH1 from limited amounts of HGH to virtually unlimited supplies of synthetic GH identified and modified the relevant ethical questions concerning GH therapy. This includes what uses of GH therapy are considered treatment and what uses are thought to be enhancement. The way we answer these questions has implications for medical insurance companies and for the ways in which health care affects equality. 45 GH therapy was first made available after 1956 when it was reported that HGH could be extracted from the pituitary glands of cadavers (Canadian Medical Association, 1967). When the only method of administering GH therapy was to first obtain very small amounts of HGH by extracting it from designated donated cadavers (Allen & Fost, 2003; Carel, 2002; Tanner, 1967; Verweij & Kortmann, 1997), the stringent method itself encouraged strict HGH therapy standards and limited ethical concerns about who should be able to use HGH therapy. The limited supply of HGH supported the belief that only a select group of individuals who were thought to need GH to treat predetermined medical conditions ought to receive therapy because there was not enough to distribute to everyone who might want, need, or benefit from GH therapy (Guyda, 1999; Lee, 2006; Verweij & Kortmann, 1997). Individuals who were determined to have a genuine need for HGH therapy were primarily children whose short stature was the result of a disease such as GHD or chronic renal failure and Turner's syndrome, which are non-GHD diseases (Verweij & Kortmann, 1997).3 The claims were that these individuals had a disease, defined as bodily dysfunction (Boorse, 1975, 1976) or deviation from species-typical normal functioning (Daniels, 1985). The presence of disease gave them a legitimate claim to scarce medical resources, meaning that their use of HGH therapy is considered to be treatment. 46 These claims created the grounds for diagnosis-based arguments, which exclude most non-GHD individuals from GH therapy. Even though some studies suggest that individuals without GHD or other select diseases could have the same favorable outcomes of therapy as GHD individuals (Tanner, 1967), it was once a common practice to rely on diagnosis-based arguments to support reserving the limited supplies of HGH for those with a disease. This is still a persistent belief in GH discourse, even though there are more recent studies that suggest that non-GHD individuals can also experience an increase in adult height as a result of GH therapy (Dahlgren, 2011; Finkelstein, 2002; Leschek, 2004). As supplies of synthetic GH increased the availability of GH, the thought was that more individuals could be allowed to utilize GH therapy because the argument that limited supplies of GH ought to limit access to GH therapy no longer held. Subsequently, the appropriateness of strict standards for GH distribution based on diagnosis was called into question (Lee, 2006). Now that minimal amounts of HGH were no longer able to support limiting HGH therapy to particular individuals, other arguments had to be put forth to restrict the use of GH for specified therapeutic uses. As the arguments in GH discourse evolved, individuals with ISS or individuals who are just shorter than they or their parents want them to be became more central to arguments concerning GH therapy. Furthermore, arguments also had to evolve and provide other explanations for restricting GH therapy. 47 GHD, ISS, and the Short Statured Children with ISS are extremely short individuals, whose height is below average for their age and sex, within two standard deviations from the mean in their relative predicted adult height bracket. For boys, the bracket is less than 64 inches and for girls, it is less than 60 inches (Hirsch et al., 2003). Yet individuals with ISS do not have any adverse health conditions that can be considered to be the cause of their short stature (Lee, 2006). Through testing, ISS children also are shown to have normal levels of growth hormone.2 Lee (2006) suggests that ISS children may have an underlying biological cause of their short stature that is not necessarily a disease. For instance, he suggests that among individuals with ISS, there are varying degrees of serum concentrations of IGF (insulin-like growth factor), varying stages of bone-age delay, and variations in the onset of puberty. Based on these variations in biological factors, Lee (2006) concludes that there are biological impairments that result in a lack of growth. Chernausek (2011) agrees that in most cases of ISS, there is an abnormal GH-insulin-like GH (GH-IGF) axis and suggests using this to predict response to GH therapy. If Lee (2006) and Chernausek (2011) are correct, then adverse biological mechanisms would be one difference between healthy, short children and ISS children. This would also make ISS children more similar to GHD children. Instead of using diagnosis to determine who is 48 allowed to receive GH therapy, Lee (2006) suggests using molecular defects in growth-related genes to determine acceptability of GH therapy. Lee claims that determining who should be allowed to receive therapy is an issue of whether short stature is a disease or a spectrum of development. Making this determination will determine if GH therapy for ISS is a therapeutic intervention for a biological abnormality or an enhancement intervention for short stature not caused by a disease. It would seem that ISS individuals have many factors in their favor that would end questioning the acceptability of allowing them to have GH therapy, including FDA approval of GH therapy for individuals with ISS, clinical trials that support the potential benefits of GH therapy, and the wide availability of GH.4 Since physicians are the gatekeepers of GH therapy, however, and many are still hesitant to suggest GH therapy for their ISS individuals, the acceptability of allowing them to receive GH therapy is still questioned, making their place in GH discourse one of uncertainty. Among physicians and bioethicists, there is lack of agreement about the requirements that individuals must satisfy to use GH therapy. Based on utilitarian arguments and prioritarian arguments, all individuals of a certain extreme short stature should be allowed to have GH therapy regardless of their diagnosis or lack of diagnosis because some heights are considered disadvantageous and disabling. Others argue that ISS individuals are 49 considered healthy and that GH therapy should be reserved for unhealthy individuals. Determining how individuals with ISS fit into GH discourse is more ethically challenging when we consider that many ISS children have the same extreme short stature and the same projected adult height as many GHD children. This is problematic because the acceptability of giving GH therapy to individuals with GHD has rarely been questioned, while individuals with ISS are commonly excluded from GH therapy. Children with ISS can be in the same height percentile (1st percentile) as healthy short, children. Since healthy, short children do not have a disease that causes their short stature, healthy, short children and children with ISS are usually grouped together as "non-GHD" individuals. This is the case with some clinical trials, studies, and articles concerning the ethics of GH therapy. On occasion, articles also use the term "healthy, short individuals" to refer to both individuals with ISS and healthy, short individuals who have not been diagnosed with ISS. In some cases, the interchangeability of these terms is appropriate because there can be very little difference between some healthy short individuals, and some individuals with ISS. The similarities between some individuals with ISS and some healthy, short children encourage ethical questions such as ‘Are there any ethically relevant differences between individuals with ISS and healthy, short children?' and ‘If there are ethically relevant differences between individuals 50 with ISS and healthy, short children, do the differences warrant different treatment in health care?' There are some similarities between some individuals with ISS and some healthy, short individuals, such as being in the 1st percentile of height and the lack of an identifiable disease that causes their short stature; however, there are some differences amongst some healthy, short individuals and some ISS individuals. The biggest difference between these two groups of individuals is the possible biological causes of stunted height in individuals with ISS, while healthy, short children are not thought to have any biological dysfunction. This difference, however, may not be significant enough to withhold GH therapy from normal, short children if one believes that individuals with ISS ought to be allowed GH therapy, whether they have a biological dysfunction or no biological dysfunction. Some healthy, short children are of short stature because of a constitutional growth delay. This means that their growth in height has not yet occurred; however, it will occur in the future and their height will eventually catch up to the appropriate height for their age and sex. Some healthy, short children are significantly taller than ISS children and are considered to be of an appropriate height given their age and sex; however, their parents are under the assumption that they are too short in general, or that they are too short to achieve a particular goal so they seek GH therapy. These goals can include becoming a professional athlete or attaining a high-paying job in the future (Benjamin et al., 1984). 51 Some arguments conclude that because there is some evidence that shorter individuals receive lower salaries than their taller counterparts and some empirical evidence that individuals of short stature, regardless of the cause of their short stature, experience some decreased level of wellbeing (Clemmons, 2010), healthy, short individuals, including normal short children, should be allocated GH therapy. Noeker (2011) claims that there is some reason to believe that ISS individuals (without biological dysfunction) have a lower quality of life. In agreement, Chaplin and others (2011) state that individuals with ISS and individuals with GHD can experience psychological distress as a result of their short stature, which can be remedied by GH therapy. They report that a questionnaire answered by the parents of ISS and GHD children from ages 3 to 11 showed psychological improvement over a 2-year period (most in as little as 3 months) of GH therapy. The psychological improvement most demonstrated in ISS individuals was an increase in self-esteem (Chaplin et al., 2011). Noeker and Chaplin's arguments, however, are not the dominant view. Most arguments that are a part of GH discourse do not give much credit to the empirical evidence that individuals of short stature have a decreased level of wellbeing (Guyda,1999). These arguments conclude that there is not any direct correlation between wellbeing and height, and that even if there were, there are other ways to increase wellbeing besides augmenting height using GH therapy. Arguments that follow this structure 52 conclude that non-GHD children should not be allowed GH therapy. When drawing this conclusion about non-GHD children, we also have to consider that there also is not any direct evidence that GH therapy improves GH individuals' wellbeing (as cited in, Durand-Zaleski, 2011; Lee, 2006). Arguments against giving non-GHD children GH therapy also state that it is more difficult to manage parents' interests in making non-GHD children taller by utilizing GH therapy than the parents of GHD children. These arguments do not deny that this problem exists in many instances of allocating GH therapy to GHD children, but claim that this problem is especially hard to identify, manage, and counter if necessary, when children are just shorter than what their parents desire (Benjamin et al., 1984). Both of these arguments represent a general concern associated with GH therapy. The concern is that since there is not any direct evidence that short stature correlates with decreased wellbeing and that it can be difficult to manage the expectations of parents with short, non-GHD children, the risks associated with using GH therapy to treat nonpathological, short children is too great a risk to take. The risks associated with medical intervention are especially relevant when children are the potential patients. Children are a vulnerable population that can be manipulated and taken advantage of if the interests of outside parties are not properly managed. This is especially important since children do not consent to medical intervention; rather, their parents give consent for them. In some instances, 53 intervention and the accompanying risks, however, may be worthwhile. The treatment/enhancement distinction may be used to distinguish between risks that are worthwhile and risks that are not worthwhile; however, to do this, arguments that use the treatment/enhancement distinction must also rely on other relevant concepts. But the treatment/enhancement distinction may not always match perfectly with the distinction between acceptable and unacceptable risks if it can be determined that both GHD and non-GHD experience some of the same downsides of short stature. To sort all the changes that the availability of GH has caused amongst the relevant individuals in GH therapy and to determine acceptability, many GH standards have been proposed. Some argue for the original standards, that GH therapy should only be allowed for individuals with GHD or some other short-stature-causing disease (Growth Hormone Research Society, 2000; Lantos & Siegler, 1989). Others argue that diagnoses should not determine acceptability of GH therapy, or that diagnoses should be taken into consideration as only one factor among many others when determining acceptability of GH therapy (Lee, 2006; Pfeifer, 2011). Although old standards may not match the current supply of GH, it has been argued that it would be immoral to give GH therapy to anyone who wanted to be taller without some restrictions (Allen & Fost, 2003). The next section explores questions whose answers hinge on what standards are deemed appropriate for GH therapy. 54 Equality When drawing conclusions that do not allow a group of individuals to take part in any therapeutic practices, a likely accompanying concern is whether those conclusions contribute to inequality. When drawing conclusions about who is entitled to GH therapy, those drawing the conclusions must also consider whether their GH therapy standards contribute to inequality among individuals of short stature. When different conclusions are drawn about similar medical conditions, we have to question the legitimacy of the criteria used to draw those conclusions. Arguments that focus on diagnosis have to question if the presence of disease or the lack thereof is a legitimate criterion for GH therapy distribution or whether it is a morally arbitrary criterion. Whether treating GHD and non-GHD individuals as equals is the proper response to the dilemma of how to fairly distribute GH therapy depends on the amount of emphasis we place on diagnosis. Another aspect of the relationship between GH therapy and equality is examining how expanding the range of individuals who ought to be allowed GH therapy, to include non-GHD individuals will affect equality among the general population. First, if the requirements for GH therapy are relaxed, making it more widely available, the rich are more likely to have the resources to obtain therapy, making them more likely to reap the benefits of therapy. Conversely, many poor people will not have the opportunity to receive GH therapy because they lack certain resources, namely financial 55 resources. In a sense, this will make the rich, richer. If it is indeed true that taller people are more likely to receive high-paying jobs, then making the already rich, taller will increase the likelihood that they will have higher salaries than their comparatively shorter counterparts who will earn less. Second, expanding the type of individuals who are allowed GH therapy may raise the highest percentile of height, increasing the gap between people in the highest percentile (the tall) and people in the last percentile (the short) (Tauer, 1995). Increasing the amount of people who are allowed GH therapy will change the standards for who is considered tall and who is considered short. Allen and Fost (1990) note that there is another option for examining the relationship between GH therapy and equality. GH therapy can be viewed as a privilege that is allowed to those who can pay for it but not a right or something owed to those who cannot afford it. Proponents of this option state that society is not obligated to provide some opportunities to all individuals. Society is only obligated to provide people with basic needs like food, education, and perhaps basic health care (Allen and Fost, 1990). In this instance, GH therapy is more or less seen as an enhancement that certain individuals are not entitled to, unlike therapeutic practices. The aim of this section is not to advocate for a particular set of requirements that individuals must satisfy to receive GH therapy or to argue that medical insurance companies should bear the financial costs of GH 56 therapy or that GH therapy contributes to inequality. This section provides context for the arguments that are to follow and what is at stake for the individuals whom these arguments affect. The following section discusses examples of diagnosis-based arguments, which advocate standards of GH therapy distribution that are based on separating "treatment" practices from "enhancement" practices. Diagnosis-Based Arguments Typically, diagnosis-based arguments reference some point at which GH therapy is no longer a therapeutic practice, but an enhancement practice. In diagnosis-based arguments, this line is based on the presence of disease. Typically, diagnosis-based arguments model the following form: Individuals whose short stature is caused by one of the diseases on a specified list, including GHD, should be allowed to have GH therapy. When GH therapy is used to ameliorate the short stature of these individuals, therapy is considered to be treatment and thus permissible. Conversely, individuals whose short stature is not caused by a disease, but rather factors like genetics or when the cause is unknown, should not be allowed to have GH therapy. When GH therapy is used to ameliorate the short stature of these individuals therapy is considered to be enhancement and thus impermissible. Another version of diagnosis-based arguments begins with the claim that if the goal of medicine is to treat diseases, then medical practices should 57 be used to treat only diseases or at least prioritize treatment of disease. This version of diagnosis-based arguments relies on debatable judgments about the goals of medicine and the nature of disease to reach its conclusion. In this section, I discuss three diagnosis-based arguments that are commonly cited in GH discourse5 whose structure is similar to the aforementioned argument model. Through this discussion, I will show how bioethicists who offer these arguments utilize a particular explanation of disease to withhold GH therapy from individuals with ISS even though their arguments are contrary to evidence that shows that individuals with ISS (or non-GHD, as I will refer to them) can benefit from GH therapy. Diagnosis-Based Arguments and Clinical Trials Tanner (1967) reports that both individuals with GHD and ISS can experience positive outcomes of HGH therapy. As reported by Tanner (1967), in a clinical trial, 10 of 16 children with ISS grew 0.52 times their expected height velocity before undergoing HGH therapy but grew 1.92 times their expected height velocity during the first year of therapy. Two children in the clinical trial with ISS had a poor or very little response to treatment, and 4 children with ISS developed antibodies, which can be an unforeseen consequence to therapy for some children, regardless of GHD or ISS. Although the outcomes of therapy for the children with ISS were not as great as the children with GHD, the children with ISS still experienced some 58 increase in height after undergoing HGH therapy. This study concluded that GHD children can benefit from HGH therapy, in terms of an increase in height, while non-GHD children can also benefit from GH therapy. Tanner's (1967) conclusions were not the dominant view of the time, but the idea and the evidence that ISS individuals can benefit from GH therapy was a part of the literature. The assumption behind limiting GH therapy to GHD children was that these were the only individuals that could benefit from GH therapy; however, Tanner's (1967) study suggested that this assumption was false. Most diagnosis-based arguments that were made at the onset of GH therapy can only be criticized for not acknowledging that there was at least one trial that presented results that were contrary to their diagnosis-based arguments, whereas arguments that arose much later in the history of GH discourse face a different criticism. Once more trials were available that showed individuals with ISS had positive outcomes of GH therapy, diagnosis-based arguments that continued to conclude that individuals with ISS should not be allowed GH therapy face criticisms for making arguments contrary to the evidence. A different argument for limiting GH therapy to children with GHD is that only these children-not ISS children-have a disease. However, many diagnosis-based arguments made at any point in GH discourse, such as an argument made by Mason (1972), face criticisms grounded in their use of disease. 59 Mason (1972) argues that GHD children use GH therapy for treatment purposes, while non-GHD children use GH therapy for enhancement purposes. He supports this argument with the claim that individuals whose GHD diagnosis has been proven by thorough testing are the only ones who can benefit from GH therapy (Mason 1972); however, if there is some reason to believe that diagnosis is not the sole determinant of responsiveness to GH therapy, then another option for the basis of Mason's argument is an explanation of disease. Although he does distinguish between uses of GH therapy that are for therapeutic purposes and uses of GH therapy that are for enhancement purposes, the treatment/enhancement distinction is not the basis of his argument. The treatment/enhancement distinction is not a candidate for the concept that Mason's ethical judgments are grounded upon because the distinction itself must be grounded in a concept. And in this case, that concept is disease. Arguably, Mason's (1972) argument is an example of a diagnosis-based argument that relies on the explanation of disease as dysfunction to recommend GH therapy for the treatment of short stature for GHD children, but not for the enhancement of non-GHD children. He states that to determine the failure of growth, a patient must undergo a thyroid test to determine if the thyroid is functioning properly. If it is not functioning properly, it can cause the pituitary gland to not function properly, meaning it will not secrete enough HGH. If this is the diagnosis standard that Mason 60 utilizes for GH therapy, then individuals with GHD whose pituitary gland is dysfunctioning are allowed treatment. Conversely, individuals that do not have a dysfunctioning thyroid or pituitary gland are not allowed GH therapy, including ISS individuals. This would support his claims about treatment and enhancement uses of GH therapy better than the idea that GH therapy can only benefit individuals with GHD. Another option for the basis of Mason's (1972) claims about treatment and enhancement is his claim that a child has to have a suitable internal environment and an aversion free external environment, one that will be receptive to GH therapy, to benefit from therapy. Mason states that GHD children have a suitable internal environment because of their gland dysfunction. However, even if Mason's diagnosis-based argument is grounded on individuals' suitable internal environment, he is still relying on what it means for humans to function properly as the basis of his claims about GH therapy standards. If Mason's (1972) argument relies on a suitable internal environment, he must also consider that this is not the only criterion that determines success of GH therapy. Mason seems to acknowledge this when he states growth hormone is but one metabolic factor that influences growth in height. An adverse internal environment can prevent any child from being responsive to GH therapy, whether the individuals have GHD or ISS (National Institutes of Health, 1972, Root, 2011). If Mason grounds his 61 argument about treatment and enhancement on the claim that individuals must have a suitable internal environment for GH therapy to be effective, this standard should not solely apply to ISS children because his argument is true of non-GHD and GHD children. Enhancement Research on non-GHD Children Tauer (1994) criticizes the standards that were used by the National Institutes of Health (NIH) to approve clinical trials designed to determine the effectiveness of GH therapy on normal ("nondiseased"), short children (National Institutes of Health, 1990). She argues that by approving this study, the NIH permitted children to participate in clinical research for purposes other than health and medical treatment. Tauer's argument is grounded in the claim that short stature is not characterized by improper body functioning; therefore, short stature is not a disease (Tauer, 1994). Additionally, Tauer (1995) makes the claim that uses of GH therapy for treatment purposes are acceptable while uses of GH therapy for enhancement purposes are unacceptable. Rather than permit clinical trials for therapeutic purposes, Tauer (1994) argues that the standards used to permit the NIH trials lead the way for future research on children for purposes other than treatment. Tauer (1994) argues that the standards used to permit the clinical trials could be used to justify GH research for enhancement purposes, or intervention to 62 alter an undesirable condition because short stature is not a disease. Even though Tauer notes that the NIH trials claimed that enhancement applications of GH therapy were unintended, she believes the standards used to approve this study could justify greater-than-minimal risk research on children for purposes of enhancement, regardless of the NIH's intentions. This concern is grounded in children's inability to give informed consent to medical intervention. Nontherapeutic research is quite common; however, Tauer's argument goes beyond concerns about therapeutic vs. non-therapeutic research. Her concerns are focused on children as a vulnerable population and nontherapeutic research that uses this population for the sake of enhancement. Tauer's (1994,1995) argument is an example of a diagnosis-based argument. She utilizes children's diagnoses of disease, or lack thereof to make claims about what research practices are considered enhancement, and thus unacceptable. Tauer, like Mason (1972) must give the basis of her conclusions about treatment and enhancement, thus about acceptable and unacceptable research. The treatment/enhancement distinction alone is an insufficient option for the basis of her conclusions because the treatment/enhancement distinction itself must be grounded in a concept. Accordingly, Tauer offers disease as the basis for her criticisms of NIH standards that approved enhancement practices. 63 Tauer (1994, 1995) utilizes an explanation of disease as improper function to make a diagnosis-based argument, which separates treatment practices from enhancement practices. Tauer (1994) explains enhancement as altering an undesirable condition. Tauer's explanation of enhancement, however, does not separate enhancement practices from treatment practices as treatment can also be explained as altering an undesirable trait, such as the very short stature associated with ISS. Yet according to Tauer, the presence of disease in one instance of GH therapy and the lack of disease in another instance of GH therapy separates treatment from enhancement, thus acceptable medical practices from unacceptable medical practices. I further conclude that Tauer also uses disease to distinguish between acceptable risks and unacceptable risks of research practices. Although there are almost always some risks associated with most instances of biomedical research, those risks are acceptable for therapeutic purposes because there is the possibility of ameliorating disease; therefore, it is acceptable for parents to consent to research for therapeutic purposes. The risks of research, however, are unacceptable when disease is not present because the risks of intervention are not taken for the potential medical benefit; therefore, it is unacceptable for parents to consent to research for enhancement purposes. 64 Medicalizing Short Stature As most ethicists that give diagnosis-based arguments, Verweij and Kortmann (1997) argue that even if children with ISS are responsive to GH therapy, responsiveness does not make GH therapy for ISS morally justifiable. GH therapy for ISS is only justifiable if the goal of therapy is to reduce the risks of psychological and social problems that may arise from short stature, not just to make children taller. This means that GH therapy would also have to include mental health therapy. When these conditions- desire to be taller and mental health therapy- are met, GH therapy is treatment. When the goal of GH therapy is just to make children taller, Verweij and Kortmann (1997) consider intervention to be enhancement. Although Allen and Fost (1990) do not agree with diagnosis-based arguments, such as Verweij and Kortmann's argument, and choose to focus on response to intervention rather than diagnosis, Allen and Fost do make a similar claim. Allen and Fost state that regardless of the cause of short stature, GH therapy may not always be the best response to short stature and more often counseling is best. Verweij and Kortmann (1997) give a diagnosis-based argument to make the claim that when deciding whether a child with ISS should be given GH therapy, the answer is always ‘no.' According to their argument, ISS is not a disease because it does not consist of subfunctioning parts nor does it compromise the health of the individual. If the general goal of medicine is to 65 prevent, eliminate, and/or reduce the suffering that accompanies disease, then treating ISS with GH therapy is not a goal of medicine. Nonetheless, Verweij and Kortmann (1997) recognize that society may view short-statured people as abnormal but that the remedy to the social effects of short stature is not GH therapy but changing cultural stigmas; however, short-statured people may find it more beneficial to seek medical and psychological therapy than attempting to change societal views of the short. Because it can be a timely endeavor to change societal views of the short, parents of short children should not be seen as immoral people if they choose not to combat societal stigmas and seek GH therapy for their short child. It has been argued that as long as children's parents have been informed of the potential outcomes of therapy, including risks and benefits of therapy and the possibility that their children will not respond to therapy, it is the parents' right and responsibility to determine if their child with ISS should undergo GH therapy (Benjamin et al., 1984). Verweij and Kortmann's (1997) argument is subject to criticism. First, their argument acknowledges the clinical trials that report that children with ISS can benefit from GH therapy, but does not believe the evidence justifies treatment. With this reasoning, Verweij and Kortmann apply a moral standard to ISS that they do not apply to GHD. Responsiveness cannot be a criteria used to allow the use of GH therapy by individuals with GHD if it is irrelevant to determining acceptability of GH therapy by non-GHD 66 individuals. If, however, there is empirical evidence that shows that ISS can be treated with GH therapy, then the presence of disease is just one of many possible criterion for allowing or denying therapy. Furthermore, if Verweij and Kortmann (1997) utilize evidence as support for GH therapy for children with GHD, then the evidence should also be used to support GH therapy for children with ISS if it is available. Verweij and Kortmann argue that responsiveness should not justify treatment for ISS, yet rely on responsiveness to justify treatment for GHD. This is especially true if we believe in the reliability of the evidence that shows either similar responsiveness to GH therapy by GHD children and non-GHD children,6 that some GHD children do not respond to therapy (Coste et al., 1997), or that many other factors affect whether a child will respond to therapy, regardless of GHD or not (Mason, 1972; Root, 2011). A second criticism of Verweij and Kortmann's (1997) argument is based on its view of medicine. They do not recommend allowing GH therapy for most non-GHD individuals based on their view of medicine and the goals of medicine. Although they adopt a general view of medicine's goals, which is to treat diseases, the actual practices of medicine differ greatly from this view. Medical practices include ameliorating ailments that are not diseases such as treating a deviated septum with rhinoplasty. One conclusion to draw is that either medical practices do not live up to the goals of medicine or Verweij and Kortmann's (1997) view of medicine's goal is just one of many 67 views, as considering a practice enhancement does not mean that it is not a part of medicine's goals. Diagnosis-based arguments, demonstrated by the arguments offered by Tauer (1994, 1995), Mason (1972), and Verweij and Kortmann (1997), are examples of one type of argument in GH discourse that still persists. The basis of their arguments is that some practices are treatment, thus take priority over practices that are enhancement. To make their argument, I argue that they rely on the explanation of disease as dysfunction (see Chapter 2). Mason (1972), Tauer (1994, 1994), and Verweij and Kortmann (1997) all give diagnosis-based arguments that exclude ISS individuals from GH therapy, but their arguments do not rely on the treatment/enhancement distinction; they rely on the presence of disease. As such, Tauer's argument cannot be criticized on the grounds that it relies on the distinction; however, it can be criticized for not acknowledging other accounts of disease and/or it can be criticized for deviating from the evidence. Conclusion In this chapter, I argue that arguments that separate uses of GH therapy that are considered to be treatment from uses of GH therapy that are considered to be enhancement, otherwise known as diagnosis-based arguments, do not outright rely on the treatment/enhancement distinction 68 because the distinction cannot function in arguments without first relying on another concept. In the case of diagnosis-based arguments, they rely on an explanation of disease as dysfunction to claim that when individuals with GHD and individuals with other specified diseases use GH therapy, it is a practice of treatment; however, when GH therapy is used by individuals with ISS, it is considered enhancement. Diagnosis-based arguments can avoid some criticisms if they acknowledge that there may be reasons to deny GH therapy to some GHD individuals because labeling an ailment a disease is not the sole criterion in determining the acceptability of GH therapy. Furthermore, individuals who make diagnosis-based arguments have to acknowledge that it does not follow that considering an ailment a disease means that those with the disease should be treated. This approach acknowledges that there are other criteria that should be involved in determining the acceptability of GH therapy, such as the height of children's parents, safety, likelihood of response to treatment, costs, the psychological effects of therapy, and the psychological effects of not allowing the patient to receive therapy. This approach also allows diagnosis-based arguments to place some importance on whether individuals who desire GH therapy have been diagnosed with GHD or with another disease that causes short stature. Acknowledging that it may be acceptable to allow some individuals with ISS to have GH therapy and unacceptable to not question whether all 69 GHD individuals ought to be allowed GH therapy, arguably, follows one notion of justice in which individuals in similar situations are treated in similar ways (Beauchamp & Childress, 2001), by utilizing the same standards for both types of individuals. Carl Elliot (2005) shows how almost any practice that may prima facie appear to be enhancement can be explained in such a way that makes the practice treatment and vice versa. Giving equal consideration to individuals with ISS and GHD also acknowledges that both are seeking some form of enhancement. It also acknowledges that the parents of children with ISS are not all bad people, unwilling to accept the height that their genes and their ancestors' genes have determined for to their children or that the parents of ISS children suffer from excessive greed (Wasserman, 2004). Regardless of the approach that is taken to determine the acceptability of GH therapy, bioethicists, pathologists, pediatricians, and endocrinologists have to remember that children are the ones that have to bear the risks of therapy (Benjamin et al., 1984) and the negative outcomes of being denied therapy. Therefore, determining whether certain criteria for GH therapy is justified in denying ISS children GH therapy should be reevaluated, taking into account the clinical trials that report similar outcomes of GH therapy for GHD and ISS children. We can argue that society should change its negative views about short stature and pay equal salaries to the short and the tall, but while society is making the transition to viewing the short-statured in a more 70 positive way, children are the ones who have to remain short and handle the social stigma attached to being short. 71 Endnotes 1. Human growth hormone (HGH) is a protein consisting of 191 amino acids that is stored and secreted by the pituitary gland. When the pituitary gland does not secrete enough HGH or when a patient has another specified disease, the result is typically short stature. Other factors such as genetic, social, psychological, nutritional, or poor health can also determine height. 2. As of 2011, these diseases are approved for GH therapy by the U.S. Food and Drug Administration. Other approved diseases include Prader-Willi syndrome, small for gestational age, and Noonan's syndrome (Verweij & Kortmann,1997). 3. There is some controversy about the reliability of HGH testing. Many ISS and GHD patients are shown to have normal levels of HGH. Because of this, scholars like Saenger (2002) have called for better testing methods and Gelato and others (1986) have claimed that some testing methods such as measuring the amount of HGH released are not reliable methods to distinguish ISS from GHD. 4. In part, this idea was adapted from Hardin (2008). 5. This was determined by a literature search of GH therapy discourse. 6. Coste and others (1997) and Saenger (2002) argue that in this clinical trial children did not undergo GH therapy for long enough, which made the results of this trial inaccurate; however, the children were treated with GH for 3 years, which is the typical length of GH clinical trials. PART II WHAT IS ENHANCEMENT? INTRODUCTION The topics discussed in Part II are an extension of the topics discussed in Part I; however, Part II focuses on enhancement-the more controversial and less explored side of the treatment/enhancement distinction. Controversial topics that surround enhancement include who ought to use enhancement practices, how we are to determine what practices are enhancement, and whether it necessarily follows that deeming practices enhancement also deems them unacceptable. In Part II, I focus on arguments that contrast enhancement with treatment. As a part of my analysis of enhancement, I examine several justice arguments and their conclusions concerning the nature of enhancement and what makes it different than treatment. Although I focus on enhancement in Part II, the concerns and arguments that are present in Part I are a part of my analysis of enhancement in Part II, namely what are acceptable and unacceptable ways to treat patients and which patients ought to be given priority in health care. In Part II, I examine the justice arguments that are associated with practices that are thought to enhance our mental, intellectual, and physical capabilities. Some of the concerns that can be seen throughout Part II include 7 4 concerns about just distribution of enhancement practices, and the advantages and disadvantages conferred to individuals who use enhancement practices and how their use of enhancement practices affects individuals who do not use enhancement practices. What follows is an examination of these concerns, and others, and an examination of how treatment practices evade these concerns. I use performance enhancing drugs and cognitive enhancing drugs as these are two common forms of enhancement practices. CHAPTER 4 SPORTS AND ENTERTAINMENT: DIFFERENCES IN PERFORMANCE ENHANCING DRUG POLICIES In support of the goals of Part II of this dissertation, this chapter examines how drug regulation in sports, and the arguments supporting these practices, can inform conclusions concerning regulation practices in entertainment. At first glance, these two milieus may appear different, but by using the traditional methodologies of applied ethics, I show that entertainment and sports are similar in some important ethical respects. Considering these similarities, I ask whether arguments used to support drug policies in sports can and should be applied to entertainment. Conversely, I ask what weaknesses in the arguments for drug regulation in sports are revealed when these arguments are applied to a different milieu such as entertainment. More broadly construed, this chapter is a further attempt to discover what information is contextually important when determining what 76 practices ought to be considered enhancement and the ways in which we want enhancement practices to better our lives. Most professional sports leagues1 have policies that prohibit athletes from using a stipulated list of substances.2 Athletes who violate these policies are typically fined or barred from participating in the sport for a period of time, or even permanently. Different leagues ban different substances; however, most leagues ban what they call performance enhancing drugs, including steroids, as well as illicit or illegal drugs, such as cocaine. On a rare occasion, a 2008 article in the New York Times detailed the use of both types of drugs in a milieu outside of sports that does not ban drug use: music and film (Lambert, 2008). Yet no outcry corresponding to the distress that greets reports of drug use in sports accompanied this Times article. Here, I explore whether arguments offered for regulating drug use in sports should also apply to drug use in entertainment. I conclude that at least one argument is applicable to both sports and entertainment, and that the divergence in current policies is largely indefensible on theoretical grounds. Although individual entertainers may be subject to contracts that ban them from using certain drugs while working on specific projects, the entertainment industry as a whole does not have a uniform banned substance policy3 that all entertainers must obey, such as the policies that athletes in individual sports leagues must obey. The absence of such a policy to which all 77 entertainers are subject and thus can violate is a possible explanation (among others) for the lack of public outrage when entertainers use drugs. For instance, Sylvester Stallone, star of many popular action films, is among the entertainers who have admitted to using growth hormone (GH), a substance on most sports' list of banned substances (Weise, 2008). Despite his confession, his drug use is almost ignored by the media. Stallone is not on the front page of the Times; instead, a large picture of Major League Baseball (MLB) player Roger Clemens is on the front page, fending off accusations of being a drug dealer by a member of Congress in a federal court hearing (Wilson, 2008). That there is a uniform banned substance policy in sports to which Clemens is subject, but not one in entertainment to which Stallone is subject, can help explain the difference in responses to the use of drugs. But can these different policies be justified? One conclusion to draw from the different policies is that the differences between sports and entertainment warrant a banned substance policy in the former, but not in the latter. For example, it can be argued that sports concerns excellences of human physical achievement in which all participants must abide by the same rules, including abstaining from drug use, if they want to participate. Following the rules of the game maintains the integrity of the process used to attain physical achievement (Maschke, 2009). In contrast, it can be argued that in entertainment, it is the value of 78 the finished product, whether that be a film or a concert performance, which is important, regardless of the means used to create that product. Another conclusion to draw, however, is that there are theoretical reasons to believe that some of the criticisms applied to the use of drugs in sports ought to be taken seriously within the entertainment industry as well. I argue that at least one argument offered in favor of regulating drug use in sports, namely an ideal of fairness, also supports drug regulation in entertainment. I also consider that at least one argument against regulation in entertainment, namely that the differences in natural talent amongst entertainers create an initial uneven playing field, supports deregulation of drugs in sports. I conclude that theoretically the contemporary difference in treatment of drugs in sports and entertainment cannot be convincingly justified, although it may be explained by the argument that regulation in entertainment is not practically implementable. This chapter is divided into two parts. Part 1 sets the stage by defining performance enhancing and illicit drugs. It also develops an account of sports and entertainment and briefly describes the use of performance enhancing drugs in each milieu. Part 2 presents two of the most important and common theoretical arguments for regulation in sports and then examines whether these arguments for regulation can also be applied to entertainment. I conclude by exploring the foreseeable obstacles of regulating drugs in 79 entertainment, yet argue that these obstacles should not prevent reevaluation of the status of drug regulation in entertainment. Part 1: Setting the Stage John Hoberman (2009) uses the term "doping," a term used by regulatory agencies such as the International Olympic Committee (IOC), to refer to the act of taking performance enhancing drugs. Summarizing Hoberman's (2009) definition of "doping," this chapter defines the use of performance enhancing drugs as: 1) A pharmacological practice with the purpose of maximizing human capacity; 2) A pharmacological practice with the purpose of maximizing the capabilities of the mind and body to perform desired actions; or 3) A pharmacological practice not intended for the sole purpose of medical therapy4 but for the purposes included in (1) and (2) above. Defined broadly, performance enhancing drugs include substances such as steroids and growth hormones that are taken for the purposes mentioned above. Although generally not included in sports leagues' list of banned substances, some lists also include clauses that in some circumstances give leagues the power to ban over-the-counter (OTC) drugs, such as diuretics and laxatives, based on their potentially enhancing effects.5 80 This chapter defines illicit drugs as drugs that are illegal based on federal and/or state law as applied to the person in question. Illicit drugs are also on sports leagues' banned substance lists. One possible reason for banning illicit drugs is to allow the league to retain and promote sportsmanship and fair competition. Typically, these substances are also thought to be harmful to those who use them. Another reason is for reputation purposes: leagues do not wish to be known to support the careers of people engaged in illegal activities, whether these activities are drug use, spousal battery, theft, or any other negative or illicit behavior. A third reason for banning illicit drugs in sports rest on the contingent connection between whether a drug is illicit and whether it improves performance (Hoberman, 2009). Some illicit drugs can enhance athletes' performance, while others can have either no effect or a negative effect on performance, depending on the type of performance and the circumstances. For example, the illicit drug marijuana can enhance an athlete's performance, perhaps by calming her before competition. However, this same drug can be detrimental to her competitive edge for this very same reason. Thus, league banned substance policies typically cover both performance enhancing and illicit drugs. In entertainment, as in sports, drugs can fall under any of the relevant categories previously mentioned. Some drugs are performance enhancing, such as the steroids that sculpt an actor's body or the weight loss drug that 81 helps an actor to stay extremely thin. Some drugs are illicit and performance enhancing, such as the cocaine that enables an actor to remember his lines for a stage performance. Some drugs are simply illicit: the alcohol consumed by a teenage rock star, or the marijuana enjoyed by bands at festivals. The contingency of the relationship between whether a drug is illicit and whether it enhances performance is also present in entertainment. Some illicit drugs can act as performance enhancing drugs, while others, such as marijuana or heroin, will likely be harmful to theatrical or ballet performances. However, this is also true of drugs that are normally classified as performance enhancing drugs, such as steroids or growth hormones, which may give a singer a more muscular body but alter her voice in undesirable ways. There are many different types of drugs and many different explanations for why drugs may be deemed unacceptable in a particular field. This section shows that the contingent relationship between whether a drug is illicit and whether it is also performance enhancing in sports and entertainment is very complicated and at times can be difficult to navigate. The next section provides one of many ways to characterize sports and entertainment to help navigate each field's relationship with drugs. What Is Sport and What Is Entertainment? Most philosophy of sport literature does not give a succinct definition of sport, and in fact, warns against doing so (Feezell, 2009; McFee, 2004). 82 Nonetheless, accounts in the literature converge on the following description: sports are a subset of game in which skill is necessary to achieve a desired goal and the activity has stability (meaning the activity is not a fad). A sport must also have a wide following, meaning that the activity is liked, watched, and/or played by many people (Feezell, 2009; McFee, 2004). Separating playful sports from the more competitive type of sports this chapter is concerned with, James Keating, author of one of the earliest pieces on sports and sportsmanship, adds that "victory is the telos" of sports (as cited in Feezell, 2009), with dedication and success in competition being the means to victory.6 Sometimes drugs can help athletes attain victory. Athletes who use drugs typically desire drugs' ability to provide physical enhancement, including increased strength, muscle tone, and stamina. Athletes may also take performance enhancing drugs to enhance and prolong their careers; however, sometimes the detrimental health effects of performance enhancing drugs can prematurely end careers. In sports, the preparation and training done before any actual competition plays a crucial role in whether athletes will be successful in such a performance; this may include the preparatory practice of taking drugs. For instance, laxatives and diuretics can allow professional boxers or wrestlers to compete in matches by helping them reach a suitable weight for their desired weight class. 83 In a scenario of this sort, the preparatory practice of taking drugs, although not as controversial as some other uses of performance enhancing drugs, helps boxers compete in the actual performance of the sport and gives them the opportunity to attain victory. Athletes may also desire performance enhancing drugs' ability to fight off inflammation, which is especially appealing to cyclists. Certain performance enhancing, OTC, and illicit drugs on banned substance lists can help athletes to be both mentally and physically in the position to perform, making "performance" a term that can include actions athletes take to prepare for a game and the game itself. This definition of performance in sports can also apply to entertainment. A succinct definition of the entertainment industry is difficult to provide because there are varying views as to what it includes and excludes. For the purposes of this chapter, generally film, music, television, and staged performances such as theatre and Broadway plays are a part of the entertainment industry. "Entertainment" usually refers to any activity that brings joy, amusement, and a diversion from life's daily activities, such as playing board games or attending a music concert, while those who provide entertainment are entertainers. Using both of these definitions together, for the purposes of this paper, the term ‘entertainment industry' includes the collective businesses of film, music, television, and theatre, in which entertainers give performances that provide audiences with an amusing diversion from mundane or cumbersome daily activities.7 84 Just as drugs can help athletes prepare for performances, drugs can also help entertainers prepare for performances. Entertainers and athletes who take drugs to enhance their performances, however, each do so seeking a different type of enhancement. Entertainers usually take drugs seeking to enhance the creative abilities facilitated by the mind, rather than the physical abilities of the body, such as the violinist who takes beta-blockers to relieve anxiety that may prohibit her from playing her instrument at her normal optimal level. Drugs can also provide entertainers with certain physical enhancements that athletes also find desirable, such as increased muscle tone, which a popular singer may want in preparation for the physical demands of a world tour. Drugs have the potential to help entertainers prepare for performances and attain victory. Yet, unlike athletes, entertainers are not subject to a banned substance policy. The only common drug policy that entertainers are subject to is the law; however, if drugs can enhance entertainers' performances, just as they can enhance the performance of athletes, then perhaps a drug policy other than the law is warranted in entertainment for the sake retaining a consistent view of drugs. The next section looks at arguments that have been used to support the importance of drug regulation and determines if they also support the value of a consistent view of drugs in sport and entertainment. 85 Part 2: A