Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIV

Bayer R. , “Public Health Policy and the AIDS Epidemic: An End to HIV Exceptionalism?,” N. Engl. J. Med., 324 (1991):1500–04.

Id.

See also Bayer R. Levine C. Wolf S.M. , “HIV Antibody Screening: An Ethical Framework for Evaluating Proposed Programs,” JAMA, 256 (1986): 1768–74;.

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The risks and benefits of anonymous testing are discussed in a variety of contexts. See, for example, Hunter N. , “AIDS Prevention and Civil Liberties: The False Security of Mandatory Testing,” SIECUS Report, 16 (1987): 1–9.

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Annas G.J. Glantz L.H. Roche P.A. , Genetic Privacy Act 2(a)(8) (1995).

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For a discussion of federal legislation initiatives, including the Genetic Information Nondiscrimination in Health Insurance Act (GINHIA) of 1999, see Rothstein M.A. Hoffman S. , “Genetic Testing, Genetic Medicine, and Managed Care,” Wake Forest Law Review, 34 (1999): 849–88, at 871.

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Bayer R. , “Clinical Progress and the Future of HIV Exceptionalism,” Archives of Internal Medicine, 159 (1999):1042–48, at 1042.

Id. at 1042.

Rosenbrock , supra note 2.

Bayer , supra note 8.

Bayer , supra note 8, at 1042.

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Id. at 272.

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Wilson and Jungner enumerated the criteria that are necessary to justify a screening program. They include the existence of a cheap accurate test for a condition for which early intervention is successful and critical. PKU, hemoglobinopathies, and CAH fulfill their criteria. Wilson J.M.G. Jungner F. , “Principles and Practice of Screening for Disease,” Public Health Papers, no. 34 (Geneva: World Health Organization, 1968).

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In 1865, Gregor Mendel, the “father” of genetics, described some fundamental principles of heredity. Mendelian inheritance could be dominant or recessive, depending on whether phenotypic expression requires one or two copies of the abnormal gene. Today, inheritance is understood to be much more complex, including not only single gene disorders, but chromosomal disorders (alteration in the number of chromosomes), mitochondrial disorders (alteration in the genetic material found within the mitochondria as distinct from the nucleus), and multifactorial disorders (disorders that are the product of the interaction of multiple genes and environmental factors). It is also understood that single gene disorders are not as simple as Mendel suggested. For example, the severity and expression of single gene disorders can depend on whether the abnormal gene was inherited from the mother or the father. Modern genetics begins with, but goes beyond, Mendelian genetics. Our rapidly evolving understanding of genetics is particularly relevant to this paper's section on genetic education because what many clinicians learn in medical school is outdated by the time they complete their residencies.

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Murray , supra note 5, at 61.

Id. at 62.

Id. at 64.

Id. at 62.

Id. at 62.

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Id. at 32–33.

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Gostin Hodge , supra note 37, at 33–34.

Id. at 34–35.

Id. at 35.

citing Gugliotta G. , “Bar Codes for the Body Make It to the Market,” The Washington Post, June 21, 1999, at A1.

Rothstein , supra note 4.

Murray , supra note 5, at 71.

Gostin Hodge , supra note 37, at 23.

Rothstein , supra note 4.

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See the ASHG Report, “Report from the ASHG Information and Education Committee: Medical School Core Curriculum in Genetics,” American Journal of Human Genetics, 56 (1995): 535–37.

American Society of Clinical Oncology, “Resource Document for Curriculum Development in Cancer Genetics Education,” Journal of Clinical Oncology, 15 (1997): 2157–69.

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Fine B.A. , “The Evolution of Nondirectiveness in Genetic Counseling and Implications of the Human Genome Project,” in Bartels D.M. LeRoy B.S. Caplan A.L. , eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): At 101–18.

Michie S. , “Nondirectiveness in Genetic Counseling: An Empirical Study,” American Journal of Human Genetics, 60 (1997): 40–47.

Fine, supra note 54.

Michie , supra note 55.

See also Caplan A.L. , “Neutrality Is Not Morality: The Ethics of Genetic Counseling,” in Bartels D.M. LeRoy B.S. Caplan A.L. , eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): At 149–165;.

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Wachbroit R. Wasserman D. , “Patient Autonomy and Value-Neutrality in Nondirective Genetic Counseling,” Stanford Law and Policy Review, 6 (1995): 103–11;.

Bernhardt B.A. , “Empirical Evidence that Genetic Counseling Is Directive: Where Do We Go from Here?,” American Journal of Human Genetics, 60 (1997): 17–20;.

Clarke A. , “Is Non-Directive Genetic Counseling Possible?,” Lancet, 338 (1991): 998;.

White M.T. , “Making Responsible Decisions: An Interpretative Ethic for Genetic Decisionmaking,” Hastings Center Report, 29, no. 1 (1999): 14–21.

Clarke , supra note 56, at 998.

Touchette , supra note 52.

ASHG Report, supra note 53.

President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavior Research, Making Health Care Decisions, vol. 1 (Washington, D.C.: U.S. Gov't Printing Office, 1982);.

Katz J. , The Silent World of Doctor and Patient (New York: Free Press, 1984);.

Lidz C.W. Appelbaum P.S. Meisel A. , “Two Models of Implementing Informed Consent,” Archives of Internal Medicine, 148 (1988): 1385–89.

White, supra note 56.

See also Geller G. , “Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent” (Consensus Statement), JAMA, 277 (1997): 1467–74.

President's Commission, supra note 59.

Katz , supra note 59.