Genetic Testing and Policies ASLME Public Health Conference September 14, 2010

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1 Genetic Testing and Policies ASLME Public Health Conference September 14, 2010 Judith Daar Associate Dean, Whittier Law School Clinical Professor, UCI College of Medicine

3 Genetics and Society Genetic testing and impact on medical practice Easy access ignores I/C, informed interpretation Privacy and disruption of family relations Increasing use in ART for embryo selection

4 Louise Brown and her Parents (2003)

6 The Early Embryo Day 1 Day 2 Day 3 Day 4 Day 5

7 2008 Assisted Reproductive Technology Success Rates Babies Born: IVF: 56,790 AID: 60,000 Accounting for 2.7% of all U.S. births Worldwide >3,000,000 IVF children Average success rate per IVF cycle = 35% Compare: Natural conception = 20% Increasing use by single women and same sex couples

8 Selection of Embryos Early IVF selected embryos based on morphology Low (15-20%) implantation rate Failed ART cycles and repeated pregnancy loss difficult to explain Human Genome Project producing data on genetic disorders

10 Preimplantation Genetic Diagnosis Developed in UK in late 1980s Purpose: Visualize chromosomes to search for abnormality Single Gene Disorders : Tay Sachs, cystic fibrosis, sickle cell anemia, Duchenne muscular dystrophy, y, hemophilia Aneuploidy: extra or missing chromosome Trisomy (21 Down syndrome); Monosomy (XO, Turner Syndrome) Adult On-set Diseases: Huntington s disease, Alzheimer s, high cholesterol Type 2 diabetes cholesterol, Type 2 diabetes Gene Susceptibility: Inherited forms of breast and colon cancer

11 The PDG Technique Single blastomere obtained from eight-cell embryo (Day 3 post-conception) p Blastomeres are totipotent Flourescence in situ hybridization (FISH) Probes for five to nine chromosomes Pregnancy rates increased?

13 Possible Uses for PGD Medical Selection Sex Selection Trait Selection

15 PGD and Public Health Implications Allocation of health care technology and resources across the life cycle Cost of PGD: $15k v. lifetime treatment for disease UK licensing of PGD reflects cost/benefits analysis

16 PGD and Public Health Implications Shifting emphasis from treatment/research to prevention/elimination of disease Greater burden on those unable to access technology Expressivist arguments about value of those living with genetic disorders Displacement of funding toward detection, away from treatment, new therapies (orphaning some genetic disorders)

17 PGD and Public Health Implications Shifting responsibility for health from patient t to parent Will PGD offspring take good health for granted? Will PGD offspring be less tolerant of other illnesses?

18 Selection of Embryos for Medical Reasons Selection Based on the Health of Another To select for a savior sibling Compatible stem cells for transplantation Testing the Kantian End/Means Categorical Imperative Is one sibling being used as a means to an end?

19 The Nash Family September 2000

20 Selection of Embryos for Medical Reasons Selection Based on the Health Deficit of the embryo Deafness, dwarfism Clash of the Medical Model (disease) v. the Social Model (culture) Compare: Selecting for conditions associated with serious physical health problems

21 Nonmedical Sex Selection Gender balancing To determine a gendered birth order To raise children of a culturally preferred gender To procure an anticipated rearing experience

22 PGD for Sex Selection Experience outside U.S. shows preference for males, form of sex discrimination Male : Female Ratios Worldwide :100 Korea 110:100 India 114:100 China 119:100

23 PGD for Sex Selection in the U.S. Most common incentive: Gender Balancing Gender preferences: Girls preferred by older, less religious women Desirability: 2005 survey 41% respond they want to select gender (at no cost)

24 Objections to Sex Selection Sex selection is a form of sex discrimination Expanding control over nonessential characteristics Diverting limited resources away from genuine medical need Harm to offspring psychological l burden of fulfilling parental expectations Gender ratio imbalances

25 Enacted Statutes on PGD Direct statutes: No statutes directly address PGD Compare: Many other countries prohibit use of PGD for various purposes, esp. sex selection (UK, Canada, Germany, Italy, Switzerland) Idi Indirect statutes ttt Federal and state laws do regulate embryos research and harm to embryos

26 Are There Public Health Reasons to Regulate PGD? To Promote Greater access via mandated insurance coverage Greater genetics awareness education Greater duty on parents to maximize the well-being of future offspring To Restrict Focus on embryo destruction as a part of PGD Permit use only in cases of lethal or serious anomalies Prohibit sex selection for all nonmedical reasons

28 Thanks So Much

The Ethical Implications of Preimplantation Genetic Diagnosis (PGD)

The Ethical Implications of Preimplantation Genetic Diagnosis (PGD) "The great challenge to mankind today is not only how to create, but to know when to stop creating." Lord Emmanuel Jacobvitz, former