“Gen-ethics” or Just Plain Old Ethics?

1. “Gen-ethics” or Just Plain Old Ethics? Lois Shepherd, J.D. Professor of Law Associate Professor of Biomedical Ethics University of Virginia May 29, 2009 http://davegoblog.wordpress.com/2007/09/

2. Overview/Main points • We should not assume that genetic information is either the same or different from other types of information; these are the questions to ask. • There are at least seven features of genetic information that we should consider as potentially requiring different analysis than other types of information. • Encourage consideration of challenges to received wisdom.

3. Sesame Street of Legal (and Ethical) Reasoning

4. “abandoned”dna genetic test results trash fingerprints family history of genetic disorder symptoms of genetic disease past exposure to asbestos Examples in genetics

5. prenatal testing and selective abortion duty to warn of risk of genetic disorder prenatal vitamins eugenics duty to warn of infectious disease more examples . . .

6. Seven potentially distinguishing features of DNA from other types of medical information • Informational risks • Longevity • Role as identifier • Familial complications • Community consequences • Species alteration* • Expanded selection options* Ronald M. Green & A Matthew Thomas, Five Distinguishing Features for Policy Analysis, 11 Harv. J.L. & Tech. 571 (1998).

7. Informational risks • anxiety, distriess, psychological harms from learning about predisposition for untreatable disorder • stigmatization • intrusion into privacy • breach of confidentiality • discrimination in employment, health insurance, life insurance

8. where? stored DNA, cell lines, databases of information concerns? long-term, even transgenerational effects potential exposure to informational risks for progeny of donors (or ancestors) how can research subjects withdraw when they’re no longer living? Longevity

9. Role as identifier • Can DNA sequences ever be considered anonymous? • Databanks (research, military, law enforcement) • “Function creep”

10. Family complications • widens circle of people exposed to informational risks • widens circle of people who may want/need to know of another individual’s genetic information

11. Community consequences --genetic information potentially shared by members of ethnic, racial or other communities

12. Potential for species alteration --germline therapies --collective reproductive decisions to avoid births of individuals with certain genetic make-up

13. Enhanced selection options --selecting who will be born on the basis of testing for certain conditions Erasing Autism Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried? By Claudia Kalb | NEWSWEEK Published May 16, 2009

14. “Genetics exceptionalism”—Genetic Information Nondiscrimination Act of 2008 • what concerns drove passage? • intrusion into privacy/psychological harm (forced genetic testing; forced sharing of results) • fairness in insurance and employment • but what’s not fair? a lot of things! the case for under-inclusiveness • the argument of unequal treatment (class inequity)* • the case for universal health care • the case for stronger protection against discrimination in the workplace *Sonia Suter, The Allure and Peril of Genetics Exceptionalism: Do We Need Special Genetics Legislation? http://papers.ssrn.com/abstract=276875

15. Different approach to privacy concerns—for some, nothing to fear --James Watson’s DNA on the internet --23andme—personal genomics service --New York Times from March: “Mr. Brin [co-founder of Google] and Ms. Wojcicki [co-founder of 23andme] said they would check whether their son, who was born in November, also has the mutation [for Parkinson’s], though he will not be able to donate his DNA in the usual way — putting saliva in small tubes, as 23andMe has promoted at celebrity-studded “spit parties.” “Babies can’t spit into a tube,” Mr. Brin said.

16. Research on stored biological samples • Not covered by federal regulations if anonymized or de-identified • Problems: • is DNA ever lacking identification? • would donors have consented to this research? • Alternative view: Create databanks with newly collected tissues samples or DNA sequences

17. Prenatal testing and selection—wide variety of views about norms • No selection • Select to prevent suffering of children • Select to prevent suffering of children/parents • Select to prevent dashed expectations of parents about parenting • Allow selection for any and every reason—musical pitch; deafness

18. If prenatal genetic testing is a public health issue, what kind of issue is it? • In one study of Victoria, Australia, only 5 percent of pregnancies in which the fetus was diagnosed with Down syndrome resulted in a live birth. • The authors of this study concluded: “The data presented in this article, together with the greater life expectancy now experienced by people with DS, underline the need for continual monitoring to ensure appropriate provision of services for individuals born with DS and their families.” • An editorial accompanying the study’s publication, however, drew a different conclusion: “There is every reason to believe that increasing the proportion of cases diagnosed prenatally (among younger or older mothers) will result in an increase in selective pregnancy terminations and reduced birth prevalence, a desirable and attainable goal. . . There are few situations in which investment in health services has such a clear public health impact.” Veronica R. Collins et al., Is Down Syndrome a Disappearing Birth Defect?, J. Pediatr. 152(1) (2008): 20-24; David A. Savits, How Far Can Prenatal Screening Go in Preventing Birth Defects, J. Pediatr. 152(1) (2008).

19. Informed consent and breast cancer mutation searching • How do we think about informed consent for genetic testing when responsibility for others, rather than their own interests, is a motivator for women getting screened? • Genetics is by definition relational; what does that mean for practices based on autonomy?