“Gen-ethics” or Just Plain Old Ethics?

http://davegoblog.wordpress.com/2007/09/

Lois Shepherd, J.D.

Professor of LawAssociate Professor of Biomedical EthicsUniversity of Virginia

May 29, 2009

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.

Sesame Street of Legal (and Ethical) Reasoning

Examples in genetics

“abandoned”dna

genetic test results

trash fingerprints

family history of genetic disorder

symptoms of genetic disease

past exposure to asbestos

more examples . . .

prenatal testing and selective abortion

duty to warn of risk of genetic disorder

prenatal vitamins eugenics

duty to warn of infectious disease

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).

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

Longevity

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?

Role as identifier

Can DNA sequences ever be considered anonymous?

Databanks (research, military, law enforcement)

“Function creep”

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

Community consequences

--genetic information potentially shared by members of ethnic, racial or other communities

Potential for species alteration

--germline therapies

--collective reproductive decisions to avoid births of individuals with certain genetic make-up

Erasing AutismScientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?By Claudia Kalb | NEWSWEEKPublished May 16, 2009

Enhanced selection options

--selecting who will be born on the basis of testing for certain conditions

“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

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.

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

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

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).

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?