“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?