Title | University of Utah Undergraduate Research Abstracts, Volume 9, Spring 2009 |
OCR Text | Show A Message from President Young.....2 A Message from John Francis.....3 A Message from Steve Roens.....4 Undergraduate Abstracts.....5 A Message from Jill Baeder.....69 Research Posters on the Hill.....70 Charles H. Monson Prize Winner.....99 Undergraduate Research Conferences.....104 Undergraduate Research Scholars.....105 Psychology Senior Thesis Program.....106 Honors Program.....114 Alphabetical Index.....187 |
Subject | University of Utah -- Students -- Periodicals |
Publisher | J. Willard Marriott Library, University of Utah |
Date | 2009 |
Type | Text |
Format | application/pdf |
Language | eng |
Rights Management | Digital image © copyright 2009, University of Utah. All rights reserved. |
Holding Institution | Office of Undergraduate Studies Sill Center 195 S. Central Campus Dr. Salt Lake City, UT 84112 Office of Undergraduate Studies Sill Center 195 S. Central Campus Dr. Salt Lake City, UT 84112 |
Source Material | Bound journal |
Source Physical Dimensions | 14 cm x 21 cm |
ARK | ark:/87278/s6j966gm |
Temporal Coverage | Spring 2009 |
Setname | uu_urop |
ID | 417424 |
Reference URL | https://collections.lib.utah.edu/ark:/87278/s6j966gm |
Title | Charles H. Monson Prize Winner of undergraduate research abstracts vol 9 |
OCR Text | Show 100 Roger Aboud James Tabery ETHICAL ISSUES SURROUNDING NEWBORN SCREENING: A RAWLSIAN APPROACH Newborn screening tests have been conducted in the United States since 1962 and include tests for both endocrine and metabolic conditions. The rationale for newborn screening tests is that early detec-tion of these conditions may allow for treatment that reduces morbidity and mortality in children. Dif-ferent criteria have been developed so that state legislators have guidelines to justify which of the many newborn tests available should be mandated on their respective citizens. There are 64 possible new-born screening tests today. As of May 2009, different states throughout the U.S. vary between as few as 17 and as many 53 mandated tests for newborns. The current criteria in use were developed by the American College of Medical Genetics (ACMG) in 2006 and consist of 14 scored criteria. Establishing a higher overall score is argued to better justify state mandate than a newborn screening test with a lower overall score (see Table I). The following essay will briefly outline the history leading up to the development of the ACMG criteria and show that it is problematic with respect to social justice on at least two conditions currently under mandate. I will show that the ACMG criteria will continue to be problematic should certain newborn tests currently under debate become mandated in the future. I will then argue that this issue may be resolved by applying a Rawlsian notion of justice to modify the existing ACMG criteria. This will provide legislators and medical policy makers with more ethical guide-lines to justify mandates for newborn screening tests. In 1937, pediatrician, Dr. George Jervis identified 50 patients with mental retardation attributed to phenylketonuria (PKU). Brain damage due to PKU is irreversible, so care for these patients were pallia-tive; however, in 1951, research physician, Dr. Horst Bickel discovered that using diet therapy before appearance of symptoms prevents the development of mental retardation usually seen in PKU. In 1959, pediatrician, Dr. Robert Guthrie devised a test, which allowed screening for PKU to be done shortly after birth, although it was not until 1962 that use of this test became more prevalent. Since the 1960's, advances in medical technology have allowed researchers to increase the number of newborn screen-ing tests to 64 biochemical blood tests. Today nearly all of the 4 million infants born each year in the United States undergo newborn screening for various disorders, including PKU. The full scope of new-born screening tests costs a family anywhere from $50 to $100, the remaining cost paid for by respec-tive state subsidy. Treatment costs for any detected conditions are the responsibility of the family, med-ical insurance, or Medicaid and are usually not subsidized by state health funds. The most widely accepted goal of newborn screening is to improve health outcomes in the screened population of newborns. As the number of potential newborn screening tests increased, medical pro-fessionals and state legislators sought criteria to justify mandate and achieve this goal. One of the first sets of criteria was developed by Wilson and Jungner in 1968 for the World Health Organization (see Table II). This set of guidelines consists of ten criteria that legislators and medical policy makers could take under consideration when evaluating new screening tests for possible mandate. The problem with the Wilson Jungner criteria for newborn screening, however, is that it consists of ambiguous language. Ambiguity in the guidelines allows for more subjective interpretation by legislators and policy makers, resulting in a broader variation in the number of newborn screening tests mandated from state to state. For example, criterion #1 states that "The condition sought should be an important health problem". Criterion #3 states that "Facilities for diagnosis and treatment should be available." These two criterions beg the following questions: • What constitutes an important health problem? • Should the health problem be important from a public health point of view or simply from a newborn perspective? • How is ‘treatment' defined? • Does availability of treatment include cost and other practical concerns? Roger Aboud (James Tabery) Department of Philosophy University of Utah CHARLES H. MONSON PRIZE WINNER SPRING 2009 101 THE UNIVERSITY OF UTAH CHARLES H. MONSON PRIZE WINNER In 2004, the ACMG organized a task force to provide a uniform panel of conditions for newborn screen-ing, which could be adopted by state programs throughout the country. In 2006, the task force com-pleted the study and published the ACMG Criteria for Newborn Screening (see Table I). The ACMG crite-ria can be broken into the clinical characteristics of specific conditions, the analytic characteristics of the screening test, and the diagnosis, treatment and management of each condition. Each of 14 criteria within one of these three categories is scored on a scale from 0 to 200 with a higher overall score argued to better justify state mandate than a newborn screening test with a lower overall score. Based on the nature of a condition, its treatment, and long-term prognosis of early treatment, a potential screening test could score anywhere between 0 and 1800 on the ACMG criteria. It is important to note that a potential test could score low on some criterion(s) and still have a high overall score since there are three broad categories upon which it is scored and no criterion within each of these three cate-gories is more heavily weighted than any other. This structure proves to be problematic because it ulti-mately allows for a disparity of benefit to families and newborns when criteria concerning accessible treatment are trumped by criteria concerning screening and diagnosis. The ACMG criteria are not subject to as much criticism as the Wilson and Jungner criteria as it relates to ambiguous language and subjective interpretation. However, the ACMG criteria are problematic from a social justice point of view. Specifically, the structure of the criteria under the categories of "Cost of Treatment" and "Availability of Treatment" allows some newborn screening tests to have a higher overall score for potential conditions, which may not be realistically treatable for all newborns who test posi-tive. This results in state mandated tests for diseases, which are not realistically treatable for some fami-lies. A potential screening test that applies the ACMG criteria may have a cost of treatment above $50,000 but still have a high overall score. For example, the estimated medical costs of patients with cystic fibrosis (CF) range from $386-92,376/patient/year with a median cost of $72,034/patient/year. In addition, there are only 110 accredited CF care centers in the United States mostly located at teaching hospitals along the East and West Coast of the United States, yet CF is a mandated newborn screening test in 47 states. The same issue with cost and access to treatment may be seen with Severed Com-bined Immune Deficiency (SCID), which is currently mandated in only three states. According to ACMG criteria, CF and SCID, both under mandate in some states, would score zero on both "Cost of Treatment" and "Availability of Treatment" even though both conditions still score high enough overall to currently justify mandate. Practically, treatment for these conditions is out of reach for many families by both cost and availability, especially those families who do not have medical insurance but do not qualify for Medicaid. Treatment resources may also be limited or available only in a location beyond reasonable travel. As such, the newborn screening process based on ACMG criteria creates a disparity of benefit within the newborn population. Since state law mandates that all newborns under-go screening, the law then becomes the condition upon which the disparity is promulgated. I argue that this may be rectified by reformulating the ACMG criteria through a Rawlsian notion of social justice. Philosopher John Rawls argued that principles of justice have to do with the distribution of desirable goods such as rights, freedoms, wealth, and opportunities among members of society. Such good he calls primary goods, which he defines as things people want regardless of whatever else they want. They are wanted in this way because they are essential for achieving most of our aims in life. Rawls' first principle of justice focuses on liberty as one of these goods. Rawls argues that liberty should be distributed equally and that citizens should have an equal right to the most extensive liberty compati-ble with a like liberty for all. Rawls calls this the Equal Liberty Principle. Rawls' second principle states that everyone must have an equal opportunity of ending up in the best of positions, which is achiev-able when positions are allocated based on qualifications, and everyone has an equal chance of devel-oping whatever socially useful talents they innately possess. Rawls calls this the Equality of Fair Oppor-tunity. Rawls' core idea is that the best principles of justice are those which would be chosen by people in a sit-uation which is fair to all those doing the choosing. The best principles of justice, he argues, are those that people in a fair situation would choose. He calls this fair situation the original position. He argues that in this hypothetical situation, the choosers are self-interested, rational, and required to come to a unanimous agreement. The most important condition is that the choosers are under a veil of ignorance about their own social relations and talents. They do not know their social class, their abilities, or their 102 personal conception of the good. Rawls argues that a position with such a veil represents fairness between free and equal persons and that persons in this original position would choose the Equal Lib-erty Principle and Equality of Fair Opportunity because they lack certainty as to which class, race, gen-der, or vocation they will belong in life. To diminish or eliminate the disparity of benefit inherent in current formulation of the ACMG criteria, the goal must first be that all mandated tests benefit all newborns in a manner consistent with equal opportunity. This means that at least cost and availability of treatment must be in reasonable range of all families, including families with medical insurance, those on Medicaid, and those that have neither. This does not mean that the expected outcome of treatment is the same for all newborns, only that the practical delivery of treatment is within reach of all families. This notion meets the spirit of Rawls's Equality of Fair Opportunity principle because all newborns would then have an equal chance of devel-oping whatever socially useful talents they innately possess by receiving treatment for certain condi-tions significant enough to mandate newborn screening by the state. If only some families of newborns have access and funds to treatment, then there is an inequality to that very opportunity, which would allow many newborns to end up in the best possible position. As such, this ultimately (and negatively) affects the Equal Liberty Principle or the equal right to the most extensive liberty compatible with a like liberty for all. In other words, if the state requires through mandate that all families of newborns pay for and submit to newborn screening tests for certain conditions, then it is only just for the families to expect an equal opportunity to receive treatment for those conditions, including all reasonable, practi-cal considerations surrounding that treatment. If social justice is an important component of newborn screening, then a Rawlsian application and addi-tion to the ACMG criteria for newborn screening will provide medical policy makers with more ethical guidelines to justify mandated tests. The practical realties of treatment for CF and SCID support my claim that the ACMG criteria are insufficient as currently written. Further, there are currently over 1,200 genetic tests available and the technology for gel electrophoresis and tandem mass spectrometry will undoubtedly increase this number within a short time. Some conditions such as Duchenne muscular dystrophy and Fragile X syndrome are currently under consideration for possible mandate. Both of these disorders cost over $75,000 to treat in only a few locations in the United States. It is, therefore, imperative that this insufficiency be corrected before there is an increase in the disparity of benefit, which currently exists with newborn screening programs in the United States. One possible solution is to simply weight the "Cost of Treatment" and "Availability of Treatment" in such a way as to guarantee that any future newborn screening test meet a minimum social justice requirement. Another may be to add a separate criterion that ensures against a disparity of benefit. There may be other ways to adjust the current formulations to ensure that greater social justice is served, but it is important that, however it is done, the criteria for newborn screening it be corrected for the sake of society, families, and most importantly, for the newborns whose lives will affected most by a well-established mandate. CHARLES H. MONSON PRIZE WINNER SPRING 2009 103 THE UNIVERSITY OF UTAH CHARLES H. MONSON PRIZE WINNER Table I: ACMG Criteria for Newborn Screening (2006) 1. The condition sought should be an important health problem. 2. There should be an acceptable treatment for patients with recognized disease. 3. Facilities for diagnosis and treatment should be available. 4. There should be a recognizable latent or early symptomatic stage. 5. There should be a suitable test or examination. 6. The test should be acceptable to the population. 7. The natural history of the condition, including development from latent to declared disease, should be adequately understood. 8. There should be an agreed policy on whom to treat as patients. 9. The cost of case finding (including diagnosis and treatment of patients diagnosed) should be economically balanced in relation to possible expenditure on medical care as a whole. 10. Case finding should be a continuing process and not a "once and for all" project. Table II: Wilson and Jungner Screening Criteria (1968) THE UNIVERSITY OF UTAH 99 CHARLES H. MONSON PRIZE WINNER The Office of Undergraduate Studies administers the Charles H. Monson Essay Prize. This award honors Charles H. Monson Jr., who was a distinguished member of the University Philosophy Department from 1958 to 1974. Professor Monson earned both his bachelor's and master's degrees from the University of Utah, and received his Ph.D. from Cornell University. During his years at the University, he served as chair of the Philosophy Department and Associate Vice President for Academic Affairs. He received the University's Distinguished Teaching Award in 1970. Professor Monson was a renowned teacher with a deep commitment to the understanding of social change. In his honor, an annual prize of $600 is awarded to an undergraduate who writes an outstanding abstract and paper on social change. The abstracts are judged by a distinguished panel made of three members of the Undergraduate Council. The paper will consist of a thoughtful analysis on social change in a specific area of modern life. The Office of Undergraduate Studies at the University of Utah is proud to announce: Roger Aboud Faculty sponsor James Tabery As the recipient of the 2009 CHARLES H. MONSON ESSAY PRIZE Ethical Issues Surrounding Newborn Screening: A Rawlsian Approach James Tabery is an assistant professor in the Department of Philosophy and a member of the Division of Medical Ethics and Humanities at the University of Utah. He received his PhD in History and Philosophy of Science and his MA in Bioethics from the University of Pittsburgh in 2007. His research focuses primarily on historical and philosoph-ical aspects of the nature-nurture debate, as well as on ethical issues surrounding genetic screening. He is actively involved in the American Society of Bioethics & Humanities as well as the International Society for the History, Philosophy, and Social Studies of Biology. Roger Aboud is a senior at the University of Utah where he maintain a 3.9 GPA, majoring in Philosophy. He received a Bachelor degree in Psychology from Cal Poly San Luis Obispo in 2007 where in he coauthored a paper entitled "Technological Disasters in Natural and Built Environments" that was published in the Journal of Environment and Behavior. Roger was President of the Philosophy Club and Vice-Chair of the Philosophy Student Advisory Committee in the 2008-09 academic year. His academic interest lies at the intersection of Philosophy of Science and Ethics and he intends to pursue a PhD in Philosophy upon graduation from the University of Utah. He presented his research on the ethics of newborn screening at Research Posters on the Hill, the Utah Conference on Undergraduate Research and National Conference on Undergraduate Research. CHARLES H. MONSON ESSAY PRIZE 2009 Charles Monson Essay Prize presentation, March 31, 2009. Undergraduate Research Symposium, Olpin Union. Pictured, l-r: James Tabery, Karl and Sharon Schatten, Roger Aboud and Laurie Robinson |
Format | application/pdf |
Setname | uu_urop |
ID | 417416 |
Reference URL | https://collections.lib.utah.edu/ark:/87278/s6j966gm/417416 |