Conclusion
The stunningly rapid growth of the medical and psychosocial knowledge about HIV and its treatment has left many caregivers struggling to incorporate new findings into their work and many patients uncertain about the implications for their future life. This is a period of tremendous expectation, where the rewards of research appear high for AIDS investigators, clinicians, and people living with HIV: High expectations, however, may also lead to profound disappointment if the implied promises of new treatments for HIV are not fulfilled. Broken promises, real or imagined, will ultimately undermine the trust that is the foundation of the ethics of health care and of scientific research.
The AIDS epidemic is widely credited with having tempered the uncritical enthusiasm of U.S. society for medical miracles and unrealistic faith that science holds the key to improving the human condition. AIDS and its treatment have continually reminded us of the importance of human presence and support in illness, even when no effective therapy is possible. This valuable lesson has come at a high price and should remain the centerpiece of the ethics of HIV care, even as we work to interpret and apply the therapeutic breakthroughs of combination therapy.
This is a preview of subscription content, log in via an institution.
Buying options
Tax calculation will be finalised at checkout
Purchases are for personal use only
Learn about institutional subscriptionsPreview
Unable to display preview. Download preview PDF.
References
American Medical Association, Council on Ethical and Judicial Affairs. (1988). Ethical issues involved in the growing AIDS crisis. Journal of the American Medical Association, 259, 1360–1361.
Angell, M. (1997). The ethics of clinical research in the third world. New England Journal of Medicine, 337, 847–849.
Annas, G. (1994). The health care proxy and living will. New England Journal ofMedicine, 324, 1210–1213.
Applebaum, P. S., Roth, L. H., Litz, C. W., Benson, P., & Winslade, W. (1987, April). False hopes and best data: Consent to research and the therapeutic misconception. Hastings Center Report, 17, 20–24.
Arras, J. D. (1990, September–October).Noncompliance in AIDS research. Hastings Center Report, 20, 24–32.
Banta, H. D., & Thacker S. B. (1990). The case for reassessment of health care technology: Once is not enough. Journal of the American Medical Association, 264, 235–240.
Barber, B. (1961). Resistance of scientists to scientific discovery. Science, 134, 596–602.
Bartlett, J. G. (1997). The Johns Hopkins Hospital 1997 guide to medical care ofpatients with HIV infection (7th ed.). Baltimore: Williams & Wilkins.
Bayer, B., Levine, C., & Wolf, S. M. (1986). HIV antibody screening: An ethical framework for evaluating proposed programs. Journal of the American Medical Association, 256, 1768–1774.
Bayer, R., & Stryker J. (1997). Ethical challenges posed by clinical progress in AIDS. American Journal of public Health, 87, 1599–1602.
Beauchamp, T. L., & Childress, J. (1994). Theprinciples ofbioethics (4th ed.). New York: Oxford University Press.
Beauchamp, T. L., & Faden, R. R. (1986). A history and theory of informed consent. New York: Oxford University Press.
Blendon, R. J., & Donelan, K. (1988). Discrimination against people with AIDS: The public’sperspective. New England Journal of Medicine, 319, 1022–1026.
Chesney, M. A., Chambers, D. B., & Kahn, J. D. (1997). Risk behaviors for HIV infection in participants in preventive HIV trials: A cautionary note. Journal of Acquired immune Deficiency Syndromes & Human Retrovirology, 16, 266–271.
Conrad, P. (1985). The meanings ofmedications: Another look at compliance. Social Science and Medicine, 20, 29–37.
Conrad, P. (1987). The noncompliant patient in search ofautonomy. Hastings CenterReport, 17, 15–17.
DeVille, K. (1994). What does the law say?’ Law, ethics, and medical decision making. Western Journal of Medicine, 160. 478–480.
Dickens, B. M. (1998). Legal limits of AIDS confidentiality. Journal of the American Medical Association, 259, 3449–3451.
Doak, C. C., Doak, L. G., & Root, J. H. (1985). Teaching patients with low literacy skills. Philadelphia: LippIncott.
Farmer, A. (1993). Medical practice guidelines: Lessons from the United States. British Medical Journal, 307, 313–317.
Fleming, W. L. (1980). The sexually transmitted diseases. In J. M. Last (Ed.), Maxcy-Rosenaupreventive medicine andpublic health (1 1th ed., pp, 251–273). New York: Appleton-Century-Crofts
Freedman, B. (1987). Equipoise and the ethics of clinical research. New England Journal of Medicine, 317, 141–145.
Gamble, V. N. (1997). Under the shadow of Tuskegee: African-Americans and health care. American Journal of Public Health, 87, 1773–1778.
Gegax, T. T. (1997, November 10). TheAIDS predator. Newsweek, pp. 52–59.
Gostin, L., Ward, J. W., & Baker, A. C. (1 997). National HlV case reporting for the United States—A defining moment in the history of the epidemic. New England Journal of Medicine, 337, 1162–1165.
Grimes, R. M., Helfgott, A. W., Watson, J. R., & Eriksen, N. L. (1996). For children’s sake: New law mandates HIV testing of pregnant patients. Texas Medicine, 92(1), 36–40.
Hazard, G. (1995). Law, morals, and ethics. Southern Illinois Law Journal, 19, 447–458.
Heitman, E. (1992). The influence of values and culture in responses to suffering. In P. Stark & J. McGovern (Eds.), The hidden dimension of illness: Human suffering (pp. 81–103). New York: National League for Nursing Press.
Hippocrates. (1923). The Oath. In Hippocrates (W. H. S. Jones, Trans., pp. 164–165). Cambridge, MA: Harvard University Press.
Hopper, L. (1996, November 15). The death of a death sentence: HIV patients plot career courses. Austin American Statesman, p. A1.
Johnson, M. (1997). Workingon a miracle. New York: Bantam Doubleday.
Katz, J. (1984). The silent world of doctor andpatient. New York: Free Press.
Katzenstein, L. (1991). When he has AIDS and she doesn’t know. American Health, 10(1), 58–62.
Kopelman, L. (1988). The punishment concept of disease. In C. Pierce & D. VanDeVeer (Eds.), AIDS: Ethics and public policy (pp. 49–55). Belmont, CA: Wadsworth.
Lesar, T. S., Lomaestro, B. M., & Pohl, H. (1997). Medication-prescribing errors in a teaching hospital: A 9-year experience. Archives of Internal Medicine, 157, 1569–1576.
Levine, R. J. (1991). Informed consent: Some challenges to the universal validity ofthe western model. Law, Medicine & Health Care, 19, 207–213.
Ley, P. (1985). Doctor-patientcommunication: Some qualitative estimates on the role of cognitive factors in non-compliance. Journal of Hypertension, 3 (Suppl. 1), 51–55.
Lippmann, S. B., James, W. A., & Frierson, R. L. (1993). AIDS and the family: Implications for counselling. AIDS Care, 5, 71–78.
Lo, B., McLeod, G. A., & Saika, G. (1986). Patient attitudes to discussing life-sustaining treatment. Archives of lnternal Medicine, 146, 1613–1615.
Lowy, E., & Ross, M. W. (1994). “It’ll never happen to me”: Gay men’s beliefs, perceptions and folk constructions of sexual risk. AIDS Education and Prevention. 6,467–482.
Lurie, P., & Wolfe, S. M. (1997). Unethical trials of interventions to reduce perinatal transmission of the human immunodeficiency virus in developing countries. New England Journal of Medicine, 337, 853–856.
McKinlay, J. B. (1981). From “promising report” to “standard procedure”: Seven stages in the career of a medical innovation. Milbank Memorial Fund Quarterly, 59, 374–411.
Osborne, J. (1988). AIDS: Politics and science. New EnglandJournal ofMedicine, 318, 444–447.
Press, I. (1984). The predisposition to file claims: The patient’s perspective. Law, Medicine and Health Care, 12, 53–62.
Rabkin, J., & Ferrando, S. (1997). A “second life” agenda: Psychiatric research issues raised by protease inhibitor treatment for people with human immunodeficiency virus. Archives of General Psychiatry, 54, 1049–1053.
Ross, M. W. (1990). Psychological perspectives of human sexuality and sexually transmissible diseases. In K. K. Holmes, P. H. Mardh, P. F. Sparling, & P. J. Weisner (Eds.), Sexually transmitted diseases (2nd ed., pp. 55–60). New York: McGraw-Hill.
Ross, M. W. (1994). AIDS and the new public health. In C. Waddell & A. Petersen (Eds.), Just health (pp. 323–335).Melbourne, Australia: Churchill Livingstone.
Roter, D. L. (1977). Patient participation in the patient-providerinteraction: The effects of patient question asking on the quality of interaction, satisfaction, and compliance. Health Education Monographs, 5, 281–289.
Roter, D. L., & Hall, J. A. (1994). Strategies for enhancing patient adherence to medical recommendations. Journal of the American Medical Association. 271, 80.
Rothman, K. J., & Michels, K. B. (1994). The continuing unethical use of placebo controls. New England Journal of Medicine, 331, 394–398.
Rutherford, G. W., & Woo, J. M. (1988). Contact tracing and the control of human immunodeficiency virus infection. Journal of the American Medical Association, 259, 3609–3610.
Singer, P., Thiel, E. C., Salit, I., Flanagan, W., & Naylor, C. D. (1997). The HIV-specific advance directive. Journal of General lnternal Medicine, 12, 729–735.
Sontag, S. (1978). Illness as metaphor. New York: Farrar, Straus, & Giroux.
Sontag, S. (1989). AlDS and its metaphors. New York: Farrar, Straus, & Giroux.
Sontag, S., & Richardson, L. (1997, March 2). Doctors withhold HIV pill regimen from some. New YorkTimes, pp. 1, 18.
Stein, M. D., Freedberg, M. D., Sullivan, L. M., Savetsky, J., Levenson, S. M., Hingson, R., & Samet, J. H. (1998). Sexual ethics: Disclosure of HIV-positivestatus to partners. Archives oflnternal Medicine, 158, 253–257.
Stolberg, S. G. (1997, November 12). Some AIDS advocates now question need for special services. New York Times, pp. AI, A26.
Tarasoff v. Regents of the University of California. (1976, July 1). 13 Cal 14.
Tindall, B., Forde, S., Ross, M. W., Goldstein, D., Barker, S., & Cooper, D. A. (1994). Effects of two formats of informed consent on knowledge amongst persons with advanced HIV disease in a clinical trial of Didanosine. Patient Education and Counseling, 24, 261–266.
U.S. Department of Health and Human Services Panel on Clinical Practices for Treatment of HIV Infection. (1991). Guidelines for the use of antiretroviral agents in HlV-infected adults and adolescents. Bethesda, MD: U.S. DHHS.
Waitzkin, H., & Stoeckle, J. D. (1976) Information control and the micropolitics of health care. Social Science and Medicine, 10, 263–276.
Weiss, B. D., & Coyne, C. (1997). Communicating with patients who cannot read. New England Journal of Medicine, 337, 272–274.
Zablocki, E. (1997). Employers: Offering help along the way. Business and Health, 15(Suppl. 12), 19–23
Ziegler, J. (1997). The worker’s health: Whose business is it? Business and Health, 15(Suppl. 12), 26–29.
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2002 Kluwer Academic Publishers
About this chapter
Cite this chapter
Heitman, E., Ross, M.W. (2002). Ethical Issues in the Use of New Treatments for HIV. In: Ostrow, D.G., Kalichman, S.C. (eds) Psychosocial and Public Health Impacts of New HIV Therapies. AIDS Prevention and Mental Health. Springer, Boston, MA. https://doi.org/10.1007/0-306-47159-0_5
Download citation
DOI: https://doi.org/10.1007/0-306-47159-0_5
Publisher Name: Springer, Boston, MA
Print ISBN: 978-0-306-45973-3
Online ISBN: 978-0-306-47159-9
eBook Packages: Springer Book Archive