Hostname: page-component-76fb5796d-r6qrq Total loading time: 0 Render date: 2024-04-26T04:42:20.969Z Has data issue: false hasContentIssue false

Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIV

Published online by Cambridge University Press:  01 January 2021

Extract

The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus (HIV) different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention and that patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk.

Type
Article
Copyright
Copyright © American Society of Law, Medicine and Ethics 2001

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Bayer, R., “Public Health Policy and the AIDS Epidemic: An End to HIV Exceptionalism?,” N. Engl. J. Med., 324 (1991):1500–04.CrossRefGoogle Scholar
Id. See also Bayer, R., Levine, C., and Wolf, S.M., “HIV Antibody Screening: An Ethical Framework for Evaluating Proposed Programs,” JAMA, 256 (1986): 1768–74; De Cock, K.M. and Johnson, A.M., “From Exceptionalism to Normalization: A Reappraisal of Attitudes and Practices Around HIV Testing,” British Medical Journal, 316 (1998): 290–93;. Rosenbrock, R. et al. “The Normalization of AIDS in Western European Countries,” Social Science and Medicine, 50 (2000): 1607–29.Google Scholar
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): 19. Centers for Disease Control, “Additional Recommendations to Reduce Sexual and Drug Abuse-Related Transmission of Human T-Lymphotropic Virus Type III/Lymphadenopathy-Associated Virus,” Morbidity and Mortality Weekly Report, 35 (1986): 152–55; Centers for Disease Control, “Cooperative Agreements for Human Immunodeficiency Virus (HIV): Prevention Projects Program Announcement and Availability of Funds for Fiscal Year 1993,” 57 Fed. Reg. 40, 675–40, 682 (1992).Google Scholar
Andrews, L.B. et al., eds., Assessing Genetic Risks: Implications for Health and Social Policy (Washington, D.C.: National Academy Press, 1994); Rothstein, M.A., ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997).Google Scholar
Murray, T.H., “Genetic Exceptionalism and ‘Future Diaries’: Is Genetic Information Different from Other Medical Information?,” in Rothstein, M.A., ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 6073.Google Scholar
Health Insurance Portability and Accountability Act of 1996, Pub. L. No. 104-191, 5701, 110 Stat. 1936 (1996) (codified at 29 U.S.C.A. 1181 (Supp. 1998)).Google Scholar
Annas, G.J., Glantz, L.H., and Roche, P.A., Genetic Privacy Act 2(a)(8) (1995). For a discussion of state legislation, see Mulholland, W.F. II, Jaeger, A.S., “Comment: Genetic Privacy and Discrimination: A Survey of State Legislation,” Jurimetrics, 39 (1999): 317–26. For a discussion of federal legislation initiatives, including the Genetic Information Nondiscrimination in Health Insurance Act (GINHIA) of 1999, see Rothstein, M.A. and Hoffman, S., “Genetic Testing, Genetic Medicine, and Managed Care,” Wake Forest Law Review, 34 (1999): 849–88, at 871. For a discussion of state and federal law protections, see Rachinsky, T.L., “Comment: Genetic Testing: Toward a Comprehensive Policy to Prevent Genetic Discrimination in the Workplace,” University of Pennsylvania Journal of Labor and Employment Law, 2 (2000): 575–98, at 585–98.Google Scholar
Bayer, R., “Clinical Progress and the Future of HIV Exceptionalism,” Archives of Internal Medicine, 159 (1999):1042–48, at 1042.CrossRefGoogle Scholar
Id. at 1042.Google Scholar
Rosenbrock, et al., supra note 2; Bayer, supra note 8.Google Scholar
Bayer, supra note 8, at 1042.Google Scholar
Burris, S., “Pubic Health, ‘AIDS Exceptionalism’ and the Law,” John Marshall Law Review, 27 (1994): 251–72.Google Scholar
Id. at 272.Google Scholar
Nelkin, D. and Lindee, M.S. (contributor), The DNA Mystique: The Gene As a Cultural Icon (New York: W.H. Freeman & Co., 1995): at 198.Google Scholar
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. and Jungner, F., “Principles and Practice of Screening for Disease,” Public Health Papers, no. 34 (Geneva: World Health Organization, 1968).Google Scholar
American Academy of Pediatrics, Committee on Genetics, “Newborn Screening Fact Sheets,” Pediatrics, 98 (1996): 473501, at 474.Google Scholar
See Murray, T.H. and Caplan, A.L., eds., Which Babies Shall Live? Humanistic Dimensions of the Care of Imperiled Newborns (Clifton, New Jersey: Humana Press, 1985); Kuhse, H. and Singer, P., Should the Baby Live? The Problems of Handicapped Infants (New York: Oxford University Press, 1985); Caplan, A.L., Blank, R.H., and Merrick, J.C., eds., Compelled Compassion: Government Intervention in the Treatment of Critically Ill Newborns (Totowa, New Jersey: Humana Press, 1992); Goldworth, A. et al., eds., Ethics and Perinatology (New York: Oxford University Press, 1995).Google Scholar
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.Google Scholar
Kalow, W., “Pharmacogenetics in Biological Perspective,” Pharmacological Reviews, 49 (1997): 369–79; Goedde, H.W., “Ethnic Differences in Reactions to Drugs and Other Xenobiotics: Outlook of a Geneticist,” Progress in Clinical & Biological Research, 214 (1986): 9–20.Google Scholar
Cavalli-Sforza, L.L., “Race Differences: Genetic Evidence,” in Smith, E. and Sapp, W., eds., Plain Talk about the Human Genome Project (Tuskegee, Alabama: Tuskegee University, 1997): At 5158; Duster, T., “Human Genetics, Evolutionary Theory, and Social Stratification,” in Frankel, M.S. and Teich, A., eds., The Genetic Frontier: Ethics, Law and Policy, (Washington, D.C.: American Association for the Advancement of Science, 1994): At 131–53;. King, P., “The Dilemma of Difference,” in Smith, E. and Sapp, W., eds., Plain Talk about the Human Genome Project (Tuskegee, Alabama: Tuskegee University, 1997): At 75–82.Google Scholar
MacIntyre, A., After Virtue, 2nd ed. (Notre Dame: University of Notre Dame Press, 1984); Sandel, M., Liberalism and the Limits of Justice (Cambridge: Cambridge University Press, 1982).Google Scholar
Veatch, R.M., The Patient-Physician Relation: The Patient As Partner, Part 2 (Bloomington: Indiana University Press, 1991); Engelhardt, H.T. Jr., The Foundations of Bioethics, 2nd ed. (New York: Oxford University Press, 1996).Google Scholar
Clothier, C., Report of the [Clothier] Committee on the Ethics of Gene Therapy (London: Her Majesty's Secretary Office, 1992): at Cm 1788; Maddox, J., “New Genetics Means No New Ethics,” Nature, 364 (1993): 97; Fost, N., “Ethical Issues in Genetics,” Pediatric Clinics of North America, 39 (1992): 79–89.Google Scholar
Emanuel, E., The Ends of Human Life: Medical Ethics in a Liberal Polity (Cambridge: Harvard University Press, 1991); Loewy, E.H., “Families, Communities, and Making Medical Decisions,” Journal of Clinical Ethics, 2 (1992): 150–53; Jecker, N.S., “The Role of Intimate Others in Medical Decision Making,” The Gerontologist, 30 (1990): 65–71; Hardwig, J., “What About the Family?,” Hastings Center Report, 20 (1990): 5–10; Kuczewski, M.G., “Reconceiving the Family: The Process of Consent in Medical Decisionmaking,” Hastings Center Report, 26 (1996): 30–37.Google Scholar
Tsui, L.C. et al., “Mutation Analysis in Cystic Fibrosis,” in Dodge, J.A., Brock, D.J.H., and Widdicombe, J.H., eds., Cystic Fibrosis Current Topics (Chichester, England: John Wiley, 1992): At 2744.Google Scholar
Davidson, D.J. and Porteous, D.J., “Genetics and Pulmonary Medicine: The Genetics of Cystic Fibrosis Lung Disease,” Thorax, 53 (1998): 389–97.Google Scholar
Cattaneo, E. et al., “Diagnostic Value of Viral Culture, Polymerase Chain Reaction and Western Blot for HIV-1 Infection in 218 Infants Born to HIV-infected Mothers and Examined at Different Ages,” New Microbiologica, 22 (1999): 281–91.Google Scholar
Bryson, Y.J. et al., “Clearance of HIV Infection in a Perinatally Infected Infant,” N. Engl. J. Med., 332 (1995): 833–38; Bakshi, S.S. et al., “Repeatedly Positive Human Immunodeficiency Virus Type 1 DNA Polymerase Chain Reaction in Human Immunodeficiency Virus-Exposed Seroreverting Infants,” Pediatric Infectious Disease Journal, 14 (1995): 658–62; Roques, P.A. et al., “Clearance of HIV Infection in 12 Perinatally Infected Children: Clinical, Virological and Immunological Data,” AIDS, 9 (1995): F19–F26.CrossRefGoogle Scholar
Hendel, H. et al., “New Class I and II HLA Alleles Strongly Associated with Opposite Patterns of Progression to AIDS,” Journal of Immunology, 162 (1999): 6942–46;. Pastinen, T. et al., “Contribution of the CCR5 and MBL Genes to Susceptibility to HIV Type 1 Infection in the Finnish Population,” AIDS Research & Human Retroviruses, 14 (1998): 695–98; Roger, M., “Influence of Host Genes on HIV-1 Disease Progression,” FASEB Journal, 12 (1998): 625–32.Google Scholar
Katz, J., “Why Doctors Don't Disclose Uncertainty,” Hastings Center Report, 14, no. 1 (1984): 3544.Google Scholar
Task Force Report: Genetic Information and Insurance (Bethesda, Maryland: Genetic Information and Health Insurance, National Institutes of Health, National Center for Human Genome Research, 1993).Google Scholar
Murray, supra note 5, at 61.Google Scholar
Id. at 62.Google Scholar
Id. at 64.Google Scholar
Id. at 62.Google Scholar
Id. at 62.Google Scholar
Gostin, L.O. and Hodge, J.G. Jr., “Genetic Privacy and the Law: An End to Genetics Exceptionalism,” Jurimetrics, 40 (1999): 2158.Google Scholar
Id. at 3233.Google Scholar
Hill, A.V., “Genetics and Genomics of Infectious Disease Susceptibility,” British Medical Bulletin, 55 (1999): 401–13; Magierowska, M. et al., “Combined Genotypes of CCR5, CCR2, SDF1, and HLA Genes Can Predict the Long-Term Nonprogressor Status in Human Immunodeficiency Virus-1-Infected Individuals,” Blood, 93 (1999): 936–41.CrossRefGoogle Scholar
Gostin, and Hodge, supra note 3., at 3334.Google Scholar
Id. at 3435.Google Scholar
Id. at 35. citing Gugliotta, G., “Bar Codes for the Body Make It to the Market,” The Washington Post, June 21, 1999, at A1.Google Scholar
Rothstein, supra note 4.Google Scholar
Murray, supra note 5, at 71.Google Scholar
Gostin, and Hodge, supra note 37, at 23.Google Scholar
Rothstein, supra note 4. See also Murphy, T.F. and Lappe, M.A., eds., Justice and the Human Genome Project (Berkeley: University of California Press, 1994); Etzioni, A., The Limits of Privacy (New York: Basic Books, 1999).Google Scholar
Siegler, M., “Confidentiality in Medicine — A Decrepit Concept,” N. Engl. J. Med., 307 (1982): 1518–21.CrossRefGoogle Scholar
Chapman, A.R., ed., Health Care and Information Ethics: Protecting Fundamental Human Rights (Kansas City: Sheed and Ward, 1997); Gostin, L.O. et al., “Privacy and Security of Personal Information in a New Health Care System,” JAMA, 270 (1993):2487–93.Google Scholar
Giardiello, F.M. et al., “The Use and Interpretation of Commercial APC Gene Testing for Familial Adenomatous Polyposis,” N. Engl. J. Med., 336 (1997): 823–27.CrossRefGoogle Scholar
See also Holtzman, N.A., “Primary Care Physicians as Providers of Frontline Genetic Services,” Fetal Diagnosis & Therapy, 8, no. 1, Supplement (1993): 213–19; Hofman, K.J. et al., “Physicians Knowledge of Genetics and Genetic Tests,” Academic Medicine, 68 (1993): 625–32; Rowley, P.T. et al., “Cystic Fibrosis Carrier Screening: Knowledge and Attitudes of Prenatal Care Providers,” American Journal of Preventive Medicine, 9 (1993): 261–66.CrossRefGoogle Scholar
Lippman, A., “Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities,” American Journal of Law & Medicine, 17 (1991): 1550.Google Scholar
Touchette, N. et al., Toward the 21st Century: Incorporating Genetics into Primary Health Care (New York: Cold Spring Harbor Laboratory Press, 1997).Google Scholar
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. “Group Drafts Core Curriculum for ‘What Docs Need to Know about Genetics,’” JAMA, 279 (1998): 735–36.Google Scholar
Fine, B.A., “The Evolution of Nondirectiveness in Genetic Counseling and Implications of the Human Genome Project,” in Bartels, D.M., LeRoy, B.S., and Caplan, A.L., eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): At 101–18.Google Scholar
Michie, S. et al., “Nondirectiveness in Genetic Counseling: An Empirical Study,” American Journal of Human Genetics, 60 (1997): 4047.Google Scholar
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., and Caplan, A.L., eds., Prescribing Our Future: Ethical Challenges in Genetic Counseling (Hawthorne, New York: Aldine de Gruyter, 1993): At 149165; Yarborough, M., Scott, J.A., Dixon, L.K., “The Role of Beneficence in Clinical Genetics: Non-Directive Counseling Reconsidered,” Theoretical Medicine, 10 (1989): 139–49; Wachbroit, R. and 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.Google Scholar
Clarke, supra note 5., at 998.Google Scholar
Touchette, supra note 52. ASHG Report, supra note 53.Google Scholar
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. and Meisel, A., “Two Models of Implementing Informed Consent,” Archives of Internal Medicine, 148 (1988): 1385–89.Google Scholar
White, supra note 56. See also Geller, G. et al., “Genetic Testing for Susceptibility to Adult-Onset Cancer: The Process and Content of Informed Consent” (Consensus Statement), JAMA, 277 (1997): 1467–74.CrossRefGoogle Scholar
President's Commission, supra note 59; Katz, supra note 59.Google Scholar