Disease Stigma in U.S. Public Health Law

This article is based on a paper presented at Stigma and Global Health: Developing a Research Agenda, a conference convened by the Fogarty International Center of the National Institutes of Health (NIH), Bethesda, Maryland, September 5–7, 2001, and at Health, Law and Human Rights: Exploring the Connections, a conference honoring Jonathan Mann sponsored by Temple University, the American Society of Law, Medicine & Ethics, and others, Philadelphia, September 29–October 1, 2001. I am grateful to the organizers of the NIH conference for the opportunity to participate; to Willo Pequinat and Ellen Stover of the National Institute of Mental Health Office on AIDS, Elizabeth Cooper of Fordham Law School, and Zita Lazzarini of the University of Connecticut for discussions that guided and enriched my thinking; and to Temple law student Annemarie Bridy, Ph.D., for research assistance and advice.

Goffman E. , Stigma: Notes on the Management of Spoiled Identity (Englewood Cliffs, New Jersey: Prentice Hall, 1963).

Id. at 7.

Id. at 5.

Herek G.M. Capitano J.P. , “AIDS Stigma and Sexual Prejudice,” American Behavioral Scientist, 42 (1999): 1126–43, at 1130;.

Herek G.M. Capitano J.P. , “AIDS-Related Stigma and Attitudes Toward Injecting Drug Users Among Black and White Americans,” American Behavioral Scientist, 42 (1999): 1144–57, at 1148.

Pryor J.B. Reeder G.D. Landau S. , “A Social-Psychological Analysis of HIV-Related Stigma: A Two-Factor Theory,” American Behavioral Scientist, 42 (1999): 1193–1211, at 1201–05.

E.g., Scambler G. , Epilepsy (London: Routledge, 1989);.

Herek G.M. , “Illness, Stigma and AIDS,” in Costa P.T. Jr. VandenBos G.R. , eds., Psychological Aspects of Serious Illness: Chronic Conditions, Fatal Diseases and Clinical Care (Washington D.C.: American Psychological Association, 1990): 103–50, at 107.

See, e.g., Devine P.G. Plant E.A. Harrison K. , “The Problem of ‘Us’ Versus ‘Them’ and AIDS Stigma,” American Behavioral Scientist, 42 (1999): 1212–28.

E.g., Siegel K. , “The Motives of Gay Men for Taking or Not Taking the HIV Antibody Test,” Social Problems, 36(1989): 368–83;.

Sontag S. , Illness as Metaphor (New York: Farrar, Straus and Giroux, 1978);.

Klitzman R. , Being Positive: The Lives of Men and Women (Chicago: Ivan R. Dee, 1997);.

Derlega VJ Barbee A. , eds., HIV & Social Interaction (Thousand Oaks, California: Sage Publications, 1998);.

Zierler S. , “Violence Victimization after HIV Infection in a U.S. Probability Sample of Adult Patients in Primary Care,” American Journal of Public Health, 90 (2000): 208–15;.

Koenig L.J. , “Violence During Pregnancy Among Women with or at Risk of HIV Infection,” American Journal of Public Health, 92 (2002): 367–70.

Link B.G. Phelan J.C. , “On Stigma and its Public Health Implications.” Paper presented at Stigma and Global Health: Developing a Research Agenda, a conference convened by the Fogarty International Center of the National Institutes of Health, Bethesda, Maryland, September 5–7, 2001, available at <http://www.stigmaconference.nih.gov/LinkPaper.htm> (emphasis added).

Scambler , supra note 7, at 41.

Id. On attitudes toward HIV, see generally Herek G.M. Capitanio J. Widaman K. , “HIV-Related Stigma and Knowledge in the United States: Prevalence and Trends, 1991–1999,” American Journal of Public Health, 92 (2002): 371–77.

Scambler , supra note 7, at 57, 114.

Goffman , supra note 2, at 5. Cf. Krieger N. , “Discrimination and Health,” in Berkman L. Kawachi I. , eds., Social Epidemiology (Oxford: Oxford University Press, 2000): 36–75 (describing ideology of discrimination).

Id.

Scambler G. , “Stigma and Disease: Changing Paradigms,” Lancet, 352 (September 26, 1998): 1054–55.

Burris S. Gostin L. Tress D. , “Public Health Surveillance of Genetic Information: Ethical and Legal Responses to Social Risk,” in Khoury M. Burke W. Thomson E. , eds., Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease (New York: Oxford University Press, 2000): 527–48;.

Burris S. , “Law and the Social Risk of Health Care: Lessons from HIV Testing,” Albany Law Review, 61 (1998): 831–95.

See also Cooper E. , “Social Risk and the Transformation of Public Health Law: Lessons from the Plague Years,” Iowa Law Review, 86 (2001): 869–947.

Valdiserri R. , “HIV/AIDS Stigma: An Impediment to Public Health,” American Journal of Public Health, 92 (2002): 341–42

School Board of Nassau County v. Arline, 480 U.S. 273 (1987)

Institute of Medicine and National Academy of Sciences, Assessing Genetic Risks: Implications for Health and Social Policy (Washington D.C.: National Academy Press, 1994)

Institute of Medicine and National Academy of Sciences, Confronting AIDS: Directions for Public Health Care and Research (Washington D.C.: National Academy Press, 1986).

E.g., Mays V.M. Cochran S.D. , “Mental Health Correlates of Perceived Discrimination among Lesbian, Gay and Bisexual Adults in the United States,” American Journal of Public Health, 91 (2001): 1869–76;.

Herek G.M. Glunt E. K. , “Identity and Community among Gay and Bisexual Men in the AIDS Era: Preliminary Findings from the Sacramento Men's Health Study,” in Herek G.M. Greene B. , eds., AIDS, Identity, and Community: The HIV Epidemic and Lesbians and Gay Men (Thousand Oaks, California: Sage Publications, 1995): 55–84;.

Marks G. Burris S. Peterman T. , “Reducing Sexual Transmission of HIV from Those Who Know They Are Infected: The Need for Personal and Collective Responsibility,” AIDS, 13 (1999): 297–306;.

Stokes J.P. , “Homophobia, Self-Esteem, and Risk for HIV among African American Men Who Have Sex with Men,” AIDS Education & Prevention, 10 (1998): 278–92.

Burris , supra note 17.

See, e.g., Sutton v. United Airlines, 527 U.S. 471 (1999) (holding that courts should consider mitigating devices in determining whether or not an individual is disabled within the meaning of the Americans with Disabilities Act (ADA))

Murphy v. United Parcel Service, 527 U.S. 516 (1999) (holding that medication of a medical condition can mitigate an individual's “substantial limitation” of a major life activity, thereby precluding him from being disabled under the ADA)

Albertson's, Inc. v. Kirkingburg, 527 U.S. 555 (1999) (holding that monocular vision is not a per se disability and must be proven on a case-by-case basis).

For a general critique of judicial interpretation of the ADA by the courts, see Diller M. , “Judicial Backlash, the ADA and the Civil Rights Model,” Berkeley Journal of Employment and Labor Law, 21 (2000): 19–52.

For an empirical study of the implementation of the ADA by the Equal Employment Opportunity Commission and state fair employment practices agencies, see Moss K. , “Unfounded Mandate: An Empirical Study of the Implementation of the Americans with Disabilities Act by the Equal Employment Opportunity Commission,” Kansas Law Review, 50 (2001): 1–110.

See, e.g., Devine Plant Harrison , supra note 8;.

McAdams R. , “Cooperation and Conflict: The Economics of Group Status Production and Race Discrimination,” Harvard Law Review, 108 (1995): 1003–83.

Oyserman D. Swim J.K. , “Stigma: An Insider's View,” Journal of Social Issues, 57 (2001): 1–14, at 1.

McAdams R.H. , “An Attitudinal Theory of Expressive Law,” Oregon Law Review, 79 (2000): 339–90, at 340–41.

On norms in law and legal scholarship, see Etzioni A. , “Social Norms: Internalization, Persuasion, and History,” Law and Society Review, 34 (2000): 157–78.

Burris S. , “Education to Reduce the Spread of HIV,” in Burris S. Dalton H.L. Miller J.L. , eds., AIDS Law Today: A New Guide for the Public (New Haven: Yale University Press, 1993): 82–114;.

Burris S. , “Surveillance, Social Risk, and Symbolism: Framing the Analysis for Research and Policy,” Journal of Acquired Immune Deficiency Syndromes, 25, suppl. 2 (2000): S120–27

Southworth A. , “The Rights Revolution and Support Structures for Rights Advocacy,” Law & Society Review, 34 (2000): 1203–19;.

McCann M.W. , “How Does Law Matter for Social Movements,” in Garth B.G. Sarat A. , eds., How Does Law Matter (Evanston: Northwestern University Press, 1998): At 108.

Pryor Reeder Landau , supra note 6, at 1201–05.

Gusfield J.R. , Symbolic Crusade: Status Politics and the American Temperance Movement (Urbana: University of Illinois Press, 1963).

See Kahan D.M. , “The Secret Ambition of Deterrence,” Harvard Law Review, 113 (1999): 413–97, at 436–45

McAdams , supra note 24, at 385 n. 115.

Ewick P. Silbey S.S. , The Common Place of Law (Chicago: University of Chicago Press, 1998): at 22–23.

Id. at 20.

Scambler , supra note 16

Oyserman Swim , supra note 23.

Gostin L. Hodge J. , “The ‘Names Debate’: The Case for National HIV Reporting in the United States,” Albany Law Review, 61 (1998): 679–743

Burris , “Surveillance, Social Risk, and Symbolism: Framing the Analysis for Research and Policy,” supra note 25.

Engel D.M. Munger F.W. , “Rights, Remembrance and the Reconciliation of Difference.” Law & Society Review, 30 (1996): 7–53, at 43.

Burris , supra note 17

Scambler , supra note 7.

Slovic P. , “Facts Versus Fears: Understanding Perceived Risk,” in Kahneman D. Tversky A. Slovic P. , eds., Judgment Under Uncertainty: Heuristics and Biases (New York: Cambridge University Press, 1982);.

Tversky A. Kahneman D. , “Availability: A Heuristic for Judging Frequency and Probability,” in Kahneman D. Tversky A. Slovic P. , eds., id. at 163

Burris , supra note 17.

Engel Munger , supra note 33, at 14–15.

Id. at 44.

See Etzioni , supra note 24.

Robinson v. California, 370 U.S. 660, 678 (1962) (Douglas, J., concurring).

See, e.g., Article II, International Covenant on Civil and Political Rights, in United Nations Treaty Series, 999, no. 14668 (1976): At 171.

Trop v. Dulles, 356 U.S. 86, 101–02 (1958).

Mann J. , “Medicine and Public Health, Ethics and Human Rights,” in Mann J. , eds., Health and Human Rights: A Reader (New York: Routledge, 1999): 439–52, at 449.

Id.