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"Gen-ethics" or Just Plain Old Ethics?

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  • Genetics—study of single genes and their effects Genomics—new term of about 20 years ago, that means the study not just of single genes, but of the functions and interactions of all the genes in the genome.
  • trash—any expectation of privacy there? perhaps fingerprints are a better analogy: but then they contain only limited personal information genetic test results vs. family history (both predictors, one more predictive) symptoms of disease (both our of control of individual; hidden vs. non-hidden) past exposure to asbestos (both have information about risks of contracting disease)
  • transition: turn now to my final point—which is to be open to challenges to the received wisdom if going to engage in critical ethical analysis, have to consider a number of different viewpoints for remainder of talk, going to give some examples of very different ways of looking at questions of policy/practice relating to genetics genetics exceptionalism is the idea that genetic information is so different one of the ideas behind insurance discrimination protection is that you can’t control your genes; but you can’t control your genes when they’ve manifested themselves into disease; you can’t control a lot of your health conditions, whether they have a genetic basis or not in fact, a point made by Sonia Suter is that legislation such as this, which protects against discrimination on the basis of genetic information, but not other factor that increase your risk for disease—such as environmental factors—leads to a preference for middle class individuals in health insurance over poorer individuals (who are more often exposed to environmental risk factors). As a collective matter, this means that less advantaged individuals are subsidizing the health insurance for more advantaged individuals. if we get rid of the idea that insurance companies can discriminate on the basis of risk, we basically get rid of the idea of iinsurance as we know it: everyone should be covered with respect to employment, some of these same ideas apply.
  • best known as one of the co-discoverers of the structure of DNA helped found the Human Genome Project a very different approach—nothing to fear, nothing to hide; total transparency; let’s change attitudes and laws (if necessary)
  • There are many reasons a research subject might not want an anonymized sample to be used in a research project believed to be “important.” For example, personal information systems have been used by governments in the past to identify and locate a target race or ethnic group, both in Germany to identify Jews and others in the 1930s and in the United States to identify and detain Japanese Americans in internment camps in the early 1940s. Today, one could imagine an Arab American declining to allow personal biological samples or genetic information, stripped of personal identifiers but perhaps still containing racial or ethnic information, to be used for research designed to develop identifiers of Arab Americans in a genetic database. Robert M. Sade, Research on Stored Biological Samples Is Still Research
  • engage in discussion about disability societal attitudes that fail to understand what the lives of people with disabilities are like disability is the only thing that matters about the person disability scholars, like Adrienne Asch, have encouraged a deep look at why we want to be parents, what we want in parent/child relationships
  • Transcript

    • 1. “ Gen-ethics” or Just Plain Old Ethics? http://davegoblog.wordpress.com/2007/09/ Lois Shepherd, J.D. Professor of Law Associate Professor of Biomedical Ethics University of Virginia May 29, 2009
    • 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. Examples in genetics
      • “ abandoned”dna
      • genetic test results
      • trash
      • fingerprints
      • family history of genetic disorder
      • symptoms of genetic disease
      • past exposure to asbestos
    • 5. more examples . . .
      • prenatal testing and selective abortion
      • duty to warn of risk of genetic disorder
      • prenatal vitamins
      • eugenics
      • duty to warn of infectious disease
    • 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. 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?
    • 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 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 --selecting who will be born on the basis of testing for certain conditions
    • 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?