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HIV-Related Research with Cognitively Impaired Persons

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Case Studies in Ethics and HIV Research

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References

  • Advisory Committee on Human Radiation Experiments. (1996). Final Report. Washington, D.C: The Committee.

    Google Scholar 

  • American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision. Washington, D.C.: Author.

    Google Scholar 

  • Annas, G.J., & Glantz, L.H. (1997). Informed consent to research on institutionalized mentally disabled persons: The dual problems of incapacity and voluntariness. In A.E. Shamoo (Ed.), Ethics in Neurobiological Research with Human Subjects: The Baltimore Conference on Ethics (pp. 55–79). Amsterdam: Gordon and Breach Publishers.

    Google Scholar 

  • Backlar, P. (1998). Anticipatory planning for research participants with psychotic disorders like schizophrenia. Psychology, Public Policy, and Law, 4, 829–848.

    Article  PubMed  CAS  Google Scholar 

  • Barker, P.R. et al. (1992). Serious mental illness and disability in the adult household population: United States, 1989. In R.W. Manderscheid, M.A. Sonnenschein (Eds.), Advance Data from Vital and Health Statistics of the National Center for Health Statistics, No. 218. Washington, D.C.: Department of Health and Human Services.

    Google Scholar 

  • Beauchamp, T.L., Jennings, B., Kinney, E.D., & Levine, R.J. (2002). Pharmaceutical research involving the homeless. Journal of Medicine and Philosophy, 27(5), 547–564.

    Article  PubMed  Google Scholar 

  • Bein, P.M. (1991). Surrogate consent and the incompetent experimental subject. Food, Drug, & Cosmetic Law Journal, 46(5), 739–771.

    Google Scholar 

  • Benson, P.R., Roth, L.H., Appelbaum, P.S., Lidz, C.W., & Winslade, W.J. (1988). Informa-tion disclosure, subject understanding, and informed consent in psychiatric research. Law and Human Behavior, 12(4), 455–475.

    Article  PubMed  Google Scholar 

  • Bergler, J.H.., Pennington, A.C., Metcalfe, M., & Freis, E.D. (1980). Informed consent: How much does the patient understand? Clinical Pharmacology & Therapeutics, 27, 435–440.

    Article  CAS  Google Scholar 

  • Bisbing, S., McMenamin, J., & Granville, R. (1995). Competency, capacity, and immunity. In ACLM Textbook Committee (Ed.), Legal Medicine, 3rd edition (pp. 27–45). St. Louis, Missouri: Mosby-Year Book.

    Google Scholar 

  • Bloch, S., Chodoff, P., & Green, S. (Eds.). (1999). Psychiatric Ethics. New York: Oxford University Press.

    Google Scholar 

  • Bonnie, R.J. (1997). Research with cognitively impaired subjects: Unfinished business in the regulation of human research. Archives of General Psychiatry, 54(2), 105–111.

    PubMed  CAS  Google Scholar 

  • Carey, M.P., Carey K.B., & Kalichman, S.C. (1997). Risk for human immunodeficiency virus (HIV) infection among persons with severe mental illnesses. Clinical Psychology Review, 17, 271–291.

    Article  PubMed  CAS  Google Scholar 

  • Carey, M.P., Weinhardt, L.S., & Carey, K.B. (1995). Prevalence of infection with HIV among the seriously mentally ill: Review of the research and implications for practice. Professional Psychology: Research and Practice, 26, 262–268.

    Article  Google Scholar 

  • Cassel, C. (1985). Research in nursing homes: Ethical issues. Journal of the American Geriatrics Society, 33, 795–799.

    PubMed  CAS  Google Scholar 

  • Cassel, C. (1988). Ethical issues in the conduct of research in long term care. Gerontologist, 28, 90–96.

    PubMed  Google Scholar 

  • Centers for Disease Control and Prevention. (2006). Basic statistics. Available at http://www.cdc.gov/hiv/topics/surveillance/basic.htm# exposure. Last accessed April 3, 2006.

    Google Scholar 

  • Cournos, F. & McKinnon, K. (1997). HIV seroprevalence among people with severe mental illness in the United States: A critical review. Clinical Psychology Review, 17, 259–269.

    Article  PubMed  CAS  Google Scholar 

  • Cox, S.E. (2005). Interjurisdictional recognition of civil unions, domestic partnerships, and benefits: article: red states, blue states, marriage debates. Ave Maria Law Review, 3, 637–656.

    Google Scholar 

  • Douaihy, A.B., Stowell, K.R., Bui, T., Daley, D., & Salloum, I. (2005). HIV/AIDS and home-lessness: Part 1: Background and barriers to care. The AIDS Reader, 15(10), 516–520.

    PubMed  Google Scholar 

  • Dresser, R. (2001). Dementia research: Ethics and policy for the twenty-first century. Georgia Law Review, 35, 661–690.

    PubMed  CAS  Google Scholar 

  • Ensign, J. (2003). Ethical issues in qualitative health research with homeless youths. Journal of Advanced Nursing, 43(1), 43–50.

    Article  PubMed  Google Scholar 

  • Faden, R. & Beauchamp, T. (1986). A History and Theory of Informed Consent. New York: Oxford University Press.

    Google Scholar 

  • Flanery, M., Gravdal, J., Hendrix., P. et al. (1978). Just sign here...South Dakota Journal of Medicine, 31(5), 33–37.

    PubMed  CAS  Google Scholar 

  • Flynn, L.M. (1997). Statement. Issues Concerning Informed Consent and Protections of Human Subjects in Research: Hearings before the Subcommittee on Human resources of the House Committee on Government Reform and Oversight, 105th Cong.

    Google Scholar 

  • Fuller, M. & Sajatovic, M. (2005). Drug Information Handbook for Psychiatry. 5th ed. Cleveland, Ohio: Lexi-Comp., Inc.

    Google Scholar 

  • Garnett, R.W. (1996). Why informed consent? Human experimentation and the ethics of autonomy. Catholic Lawyer, 36, 455–511.

    Google Scholar 

  • Gray, B. (1975). Human Subjects in Medical Experimentation: A Sociological Study of the Conduct and Regulation of Clinical Research. New York: Wiley.

    Google Scholar 

  • Grisso, T. & Appelbaum, P. (1998). Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals. New York: Oxford University Press.

    Google Scholar 

  • Harvey, P., Gow, P. (1994). Introduction. In P. Harvey, P. Gow (Eds.). Sex and Violence: Issues in Representation and Experience (pp. 1–17). New York: Routledge.

    Google Scholar 

  • Hassar, M. & Weintraub, M. (1976). “Uninformed” consent and the wealthy volunteer: An analysis of patient volunteers in a clinical trial of a new anti-inflammatory drug. Clinical Pharmacology & Therapeutics, 20, 379–386.

    CAS  Google Scholar 

  • Henderly, D.E. & Jampol, L.M. (1991). Diagnosis and treatment of cytomegalovirus retinitis. Journal of Acquired Immune Deficiency Syndromes, 4(1), S6-S10.

    PubMed  Google Scholar 

  • High, D.M., Whitehouse, P.J., Post, S.G., & Berg, L. (1994). Guidelines for addressing ethical and legal issues in Alzheimer disease research: A position statement. Alzheimer’s Disease & Associated Disorders, 8 (Supp. 4), 66–74.

    Google Scholar 

  • Howard, J.M., DeMets, D., & The BHAT Research Group. (1981). How informed is informed consent? Controlled Clinical Trials, 2, 287–303.

    Google Scholar 

  • Isaac, R.J., Armat, V.C. (1990). Madness in the Streets: How Psychiatry and the Law Abandoned the Mentally Ill. New York: Free Press.

    Google Scholar 

  • Kaimowitz v. Michigan Department of Mental Health. (1973). U.S. Law Week, 42, 2063 (Circuit Court, Wayne County, Michigan).

    Google Scholar 

  • Kalichman, S.C., Carey, M.P., & Carey, K.B. (1996). Human immunodeficiency virus (HIV) risk among the seriously mentally ill. Clinical Psychology: Science and Practice, 3, 130–143.

    Article  Google Scholar 

  • Kalichman, S.C., Kelly, J.A., Johnson, J.R., & Bulto, M. (1994). Factors associated with risk for HIV infection among chronic mentally ill adults. American Journal of Psychiatry, 151(2), 221–227.

    PubMed  CAS  Google Scholar 

  • Kapp, M. (1998). Decisional capacity, older human research subjects, and IRBs: Beyond forms and guidelines. Stanford Law & Policy Review, 9, 359–365.

    Google Scholar 

  • Kennedy, G.J. (2000). Geriatric Mental Health Care: A Treatment Guide for Health Professionals. New York: Guilford Press.

    Google Scholar 

  • Keyserlingk, E.W., Glass, K., Kogan, S., & Gauthier, S. (1995). Proposed guidelines for the participation of persons with dementia as research subjects. Perspectives in Biology & Medicine, 38, 319–361.

    Google Scholar 

  • Krotoszynski, R.J. Jr. & E. Gary Spitko, E.G. (2005). Navigating dangerous constitutional straits: A prolegomenon on the federal marriage amendment and the disenfranchise-ment of sexual minorities. University of Colorado Law Review, 76, 599–652.

    Google Scholar 

  • LeBlang, T.R. & Kirchner, J.L. (1996). Informed consent and Alzheimer disease research: Institutional review board policies and practices. In R. Becker & E. Giacobini (Eds.), Alzheimer’s Disease from Molecular Biology to Therapy (pp. 529–534). Boston: Birkhauser.

    Google Scholar 

  • Levine, R. J. (1988). Ethics and Regulation of Clinical Research. New Haven, Connecticut: Yale University Press.

    Google Scholar 

  • Loue, S. (2001). Elder abuse and neglect in medicine and law: The need for reform. Journal of Legal Medicine, 22, 159–209.

    Article  PubMed  CAS  Google Scholar 

  • Lubasch, A.H. (1982). Trial ruled in 1953 death case. N.Y. Times, Sept. 14, A-14.

    Google Scholar 

  • McArthur, J.C. (2004). HIV dementia: An evolving disease. Journal of Neuroimmunology, 157, 3–10.

    Article  PubMed  CAS  Google Scholar 

  • McCollum, A.T. & Schwartz, A.H. (1969). Pediatric research hospitalization: Its meaning to parents. Pediatric Research, 3, 199–204.

    Article  PubMed  CAS  Google Scholar 

  • McKinnon K, Cournos F, & Herman R. (2002). HIV among people with chronic mental illness. The Psychiatric Quarterly, 73, 17–31.

    Article  PubMed  Google Scholar 

  • Meisel, A., Roth, L.H., & Lidz, C.W. (1977). Toward a model of the legal doctrine of informed consent. American Journal of Psychiatry, 134, 285–289.

    PubMed  CAS  Google Scholar 

  • Morrow, G., Gootnick, J., & Schmale, A. (1978). A simple technique for increasing cancer patients’ knowledge of informed consent to treatment. Cancer, 42, 793–799.

    Article  PubMed  CAS  Google Scholar 

  • National Bioethics Advisory Commission. (1998). Research Involving Persons with Mental Disorders That May Affect Decisionmaking Capacity. Rockville, Maryland: National Bioethics Advisory Commission.

    Google Scholar 

  • Park, L.C., Slaughter, R.S., Covi, L., & Kniffin, H.G., Jr. (1966). The subjective experi-ence of the research patient: An investigation of psychiatric outpatients’ reactions to the research treatment situation. Journal of Nervous & Mental Disease, 143, 199–206.

    Article  CAS  Google Scholar 

  • Riecken, H.W., & Ravich, R. (1982). Informed consent to biomedical research in Veterans Administration hospitals. Journal of the American Medical Association, 248(3), 344–348.

    Article  PubMed  CAS  Google Scholar 

  • Romero-Daza, N., Weeks, M., & Singer, M. (2003). “Nobody gives a damn if I live or die”: Violence, drugs, and street-level prostitution in inner-city Hartford, Connecticut. Medical Anthropology, 22, 233–259.

    Article  PubMed  Google Scholar 

  • Rosenberg, P.S. (1995). Scope of the AIDS epidemic in the United States. Science, 270, 1372–1375.

    Article  PubMed  CAS  Google Scholar 

  • Roth, L.H., Lidz, C.W., Meisel, A., Soloff, P.H., Kaufman, K., Spiker, D.G., et al. (1982). Competency to decide about treatment or research: An overview of some empirical data. International Journal of Law and Psychiatry, 5, 29–50.

    Article  CAS  Google Scholar 

  • Rothman, D.J. (1991). Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making. New York: Basic Books.

    Google Scholar 

  • Sachs, G. & Cassel, C. (1989). Ethical aspects of dementia. Neurologic Clinics, 7, 845–858.

    PubMed  CAS  Google Scholar 

  • Sacks, M.H., Perry, S., Graver, R., Shindledecker, R., & Hall, S. (1990). Self-reported HIV-related risk behaviors in acute psychiatric inpatients. Hospital & Community Psychiatry, 41, 1253–1255.

    CAS  Google Scholar 

  • Scott v. Casey. (1983). 562 F. Supp. 475 (N.D. Ga.).

    Google Scholar 

  • Susser, E., Valencia, E., & Conover, S. (1993). Prevalence of HIV infection among psychi-atric patients in a New York City men’s shelter. American Journal of Public Health, 83, 568–570.

    Article  PubMed  CAS  Google Scholar 

  • Universal Declaration of Human Rights. (1948). G.A. Res. 217A (III), U.N. Doc. A/810 at 71.

    Google Scholar 

  • Valenti v. Prudden. (1977). 58 A.D.2d 956, 397 N.Y.S.2d 181.

    Google Scholar 

  • Williams, R.L., Rieckmann, K.H., Trenholme, G.M., Frischer, H., & Carson, P.E. (1977). The use of a test to determine that consent is informed. Military Medicine, 142, 542–545.

    PubMed  CAS  Google Scholar 

  • Wolf, L.E. & Lo, B. (2004). Informed consent in HIV research. FOCUS, 19(4), 5–6.

    PubMed  Google Scholar 

  • Young, D.A., Zakzanis, K.K., Bailey, C., Davila, R., Griese, J., & Sartory, T.A. (1998). Further parameters of insight and neuropsychological deficit in schizophrenia and other chronic mental disease. Journal of Nervous and Mental Disease, 186(1), 44–50.

    Article  PubMed  CAS  Google Scholar 

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Authors and Affiliations

  1. Case Western Reserve University, Cleveland, OH

    Sana Loue

  2. AIDS Taskforce of Greater Cleveland, Cleveland, OH

    Earl C. Pike

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  1. Sana Loue
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  2. Earl C. Pike
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Loue, S., Pike, E.C. (2007). HIV-Related Research with Cognitively Impaired Persons. In: Case Studies in Ethics and HIV Research. Springer, Boston, MA. https://doi.org/10.1007/978-0-387-71362-5_13

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  • DOI: https://doi.org/10.1007/978-0-387-71362-5_13

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