Kennedy Institute of Ethics Journal

Kennedy Institute of Ethics Journal 8.2,June 1998

Special Issues: Genetic Testing
Guest Editors: Cynthia B. Cohen and Elizabeth Leibold McCloskey

Contributors

Contents

Articles

    Cohen, Cynthia B.
  • Wrestling with the Future: Should We Test Children for Adult-Onset Genetic Conditions?
    Subject Headings:
    • Genetic disorders in children -- Diagnosis -- Moral and ethical aspects.
    • Medical personnel and patient.
    • Genetic counseling.
    Abstract:
      Genetics professionals have been reluctant to test children for adult-onset conditions because they believe this would create psychosocial harm to children not counterbalanced by significant benefits. An additional concern they express is that such testing would violate the autonomy of these children as adults. Yet weighing the harms and benefits of such testing results in a draw, with no substantial harms proven. Moreover, such testing can enhance, rather than violate the adult autonomy of these children. In deciding whether to proceed with predictive testing of children, parents, mature children, and health care professionals should consider a complex of factors relevant to the particular child. The importance of these factors will vary depending on the condition at issue, the age and stage of development of the child, family dynamics, and the concerns, values, and objectives of the parents and mature child. The final decision whether to test a child for an adult-onset condition should rest with the parents and the mature child.
    Wachbroit, Robert Samuel.
  • The Question Not Asked: The Challenge of Pleiotropic Genetic Tests
    Subject Headings:
    • Human chromosome abnormalities -- Diagnosis -- Moral and ethical aspects.
    • Physician and patient.
    • Genetic counseling.
    Abstract:
      Nearly all of the literature on the ethical, legal, or social issues surrounding genetic tests has proceeded on the assumption that any particular test for a gene mutation yields information about only one disease condition. Even though the phenomenon of pleiotropy, where a single gene has multiple, apparently unrelated phenotypic effects, is widely recognized in genetics, it has not had much significance for genetic testing until recently. In this article, I examine a moral dilemma created by one sort of pleiotropic testing, APOE genotyping, which can yield information about the risk of two different conditions--coronary heart disease and Alzheimer's disease. A physician administering APOE testing for the beneficial purpose of assessing the risk of heart disease may discover medically useless and socially harmful information about the patient's risk of Alzheimer's disease. I explore how much providers should disclose to patients about pleiotropic test results and whether patients are obligated to know as much about their genetic condition as possible.
    Biesecker, Barabara.
  • Future Directions in Genetic Counseling: Practical and Ethical Considerations
    Subject Headings:
    • Genetic counseling -- Moral and ethical aspects.
    • Counselor and client.
    • Human chromosome abnormalities -- Diagnosis -- Moral and ethical aspects.
    Abstract:
      The accelerated discovery of gene mutations that lead to increased risk of disease has led to the rapid development of predictive genetic tests. These tests improve the accuracy of assigning risk, but at a time when intervention or prevention strategies are largely unproved. In coming years, however, data will become increasingly available to guide treatment of genetic diseases. Eventually genetic testing will be performed for common diseases as well as for rare genetic conditions. This will challenge genetic counseling practice. The ethical principles that now guide this practice take into account the personal nature of test decision making, the need to respect individual self-determination, and the importance of client confidentiality. Certain of these principles may have to be modified as genetic testing becomes more widespread in order to meet the changing needs of clients and society. This paper offers recommendations to ensure that genetic counselors will take a leading role in the future delivery of ethical genetic services.
    Suter, Sonia M.
  • Value Neutrality and Nondirectiveness: Comments on "Future Directions in Genetic Counseling"
    Subject Headings:
    • Genetic counseling -- Moral and ethical aspects.
    • Counselor and client.
    • Human chromosome abnormalities -- Diagnosis -- Moral and ethical aspects.
    Abstract:
      Common wisdom in genetic counseling, which is supported by Biesecker, holds that counselors should strive not to influence their clients' decision making. Such a presumption of nondirectiveness is challenged in this commentary.
    Nelson, James Lindemann.
  • The Meaning of the Act: Reflections on the Expressive Force of Reproductive Decision Making and Policies
    Subject Headings:
    • Prenatal diagnosis -- Moral and ethical aspects.
    • Prenatal diagnosis -- Social aspects.
    Abstract:
      Prenatal and preconceptual testing and screening programs provide information on the basis of which people can choose to avoid the birth of children likely to face disabilities. Some disabilities advocates have objected to such programs and to the decisions made within them, on the grounds that measures taken to avoid the birth of children with disabilities have an "expressive force" that conveys messages disrespectful to people with disabilities. Assessing such a claim requires careful attention to general considerations relating meaning, intention, and social practices; it has only begun to receive such attention. Building on work by Allen Buchanan, who has challenged this claim, I further consider the disabilities advocates' objection, ultimately concluding that it is misplaced; neither individual actions nor general practices of this type necessarily express disrespectful messages.
    Juengst, Eric T.
  • Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically Useless
    Subject Headings:
    • Human gene mapping -- Moral and ethical aspects.
    • Ethnic groups.
    • Social groups.
    Abstract:
      Some argue that human groups have a stake in the outcome of population-genomics research and that the decision to participate in such research should therefore be subject to group permission. It is not possible, however, to obtain prior group permission, because the actual human groups under study, human demes, are unidentifiable before research begins. Moreover, they lack moral standing. If identifiable social groups with moral standing are used as proxies for demes, group approval could be sought, but at the expense of unfairly exposing these surrogates to risks from which prior group approval is powerless to protect them. Unless population genomics can proceed without targeting socially defined groups, or can find other ways of protecting them, it may fall to individuals to protect the interests of the groups they care about, and to scientists to warn their subjects of the need to do so.



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