lecture notes 7/20/01

privacy, genetic testing, genetic discrimination

• Knoppers: "Who should have access to genetic information?"
  • genetic reductionism
    • genetic determinism again
      • genetic testing can only reveal information about probabilities, not absolute certainties
    • gene = disease
    • disease = person
    • person = gene
    • ==> difficulty distinguishing between genetic info & medical info
    • history of disease, paranoid fear of contagion
      • genetic testing is a way of creating social categories
  • key questions
    • Are insurance and employment a privilege (private goods) or a right?
    • Who carries the burden, under what conditions, and based on what values?
    • What is the "normalization" of genetic info and how does that effect our notion of citizenry?
  • Socio-Economic Harms
    • employers and insurers discriminate on the basis of genetic factors
      • denies opportunities to individuals and families
        • current law allows them to do so
      • documented cases (CRG)
      • potential for systematic discrimination against the "asympomatically ill"
        • could create a special underclass
        • unable to access necessary goods
      • counter-arguments
        • insurers: "business as usual"
          • actuarial tables
          • threat of adverse selection (or anti-selection)
        • employers: can't afford unproductive employees
          • turnover
          • sick leave
          • effects on co-workers & public
        • Council for Responsible Genetics (CRG) replies:
          • "Unlike infectious diseases genetic conditions exist at a fairly stable incidence in our society. There is no epidemic of genetic conditions. Thus, they are already reflected in the actuarial tables used by insurers to establish rates. It is misleading for insurers to suggest that their financial solvency will be jeopardized if they are obligated to insure people at risk for genetic conditions. In fact, insurers have always insured people at risk for genetic conditions. Previously, however, it was not possible to identify those people at risk for genetic conditions before they become they became ill with the disorder."
          • "Insurance or employment practices that employ these stereotypes in underwriting inadvertently reinforce them in other arenas as well. There is a strong public policy precedent for avoiding the negative social consequences of such a practice. For example, statistics demonstrate that African Americans do not live as long as Americans of Northern European descent, even when one controls for socio-economic factors. And yet no life insurance company in the country rates applicants differentially on the basis of race. To do so would violate deeply held community values about equality and equal access."
          • "Skin color, like other genetic traits, is mediated by genes. These lie entirely outside the individual's control. Whereas individuals can exercise choices about whether to smoke, how much exercise they get, and how much fat is in their diets, they cannot change the contents of their genes. To make employment or insurance decisions on the basis of genetic characteristics determined at the moment of conception is to discard cherished beliefs in justice and equality."
          • Therefore, says CRG, strong legislation is needed now to counter genetic discrimination
      • but, says Knopper, legal protections are a double-edged sword
        • can lead to stigmatization, "abnormalities"
      • genetic testing is a way of creating social categories
  • Familial Harms
    • failure to warn at-risk family members
    • failure to provide dna samples
    • "Should genetic info be considered family property? Do personal autonomy and the medical duty of secrecy trump a possible duty to warn?" (47)
  • Value-creation or reaffirmation?
    • "'To the extent that our society decides that all insurance companies [and employers] should have a redistributive role, the nature of the goods changes and the rules of equity of the marketplace might no longer apply'.
    • "To the extent that our society decides that there exists at least a minimal obligation of mutuality between at-risk family members, individual autonomy and medical secrecy can be tempered.
    • Knopper's guiding principles
      • corporate responsiblity shouldn't take away government responsibility
        • universal health care & social security
      • any constraints to the right to privacy must be clearly detailed
      • policies must be adaptive and flexible
  • Knopper's policies (see GRHR 50-52)