Publication Cover
Accountability in Research
Ethics, Integrity and Policy
Volume 7, 1999 - Issue 2-4
40
Views
2
CrossRef citations to date
0
Altmetric
Original Articles

A choice of one's own research advance directives: Anticipatory planning for research subjects with fluctuating or prospective decisionmaking impairments

Pages 117-128 | Published online: 11 Jun 2008

References

  • Annas , G.J. 1995 . How we lie . Hastings Center Report , 25 (6) : S12 – S14 .
  • Appelbaum , P.S. 1996 . Drug‐free research in schizophrenia: an overview of the controversy . IRB: A Review of Human Subjects Research , 18 (1) : 1 – 5 .
  • Appelbaum , P.S. 1997 . Psychiatric research and the incompetent patient . Psychiatric services , 48 (7) : 873 – 874 . 882
  • Appelbaum , P.S. , Roth , L.H. , Lidz , C.W. , Benson , P. and Winslade , W. 1987 . False hopes and best data: Consent to research and the therapeutic misconception . Hastings Center Report , April : 20 – 24 .
  • Backlar , P. 1994 . The Family Face of Schizophrenia , New York : Tarcher/Putnam .
  • Backlar , P. 1996 . Assessing decision‐making capacity: A slippery business . Community Mental Health Journal , 32 (4) : 321 – 325 .
  • Backlar , P. 1997 . Anticipatory planning for psychiatric treatment is not quite the same as planning for end‐of‐life care . Community Mental Health Journal , 33 (4) : 261 – 268 .
  • Backlar , P. 1998 . Advance directives for subjects of research who have fluctuating cognitive impairments due to psychotic disorders (such as schizophrenia) . Community Mental Health Journal , 34 (3) : 229 – 240 .
  • Berg , J.W. 1996 . Legal and ethical complexities of consent with cognitively impaired research subjects . Journal of Law, Medicine & Ethics , 24 : 18 – 35 .
  • Bonnie , R.J. 1997 . Research with cognitively impaired subjects: Unfinished business in the regulations of human research . Archives of General Psychiatry , 54 : 105 – 111 .
  • Callahan , D. 1995a . Terminating life‐sustaining treatment of the demented . Hastings Center Report , 25 (6) : 25 – 31 .
  • Callahan , D. 1995b . Once again, reality: The lesson from the SUPPORT study. Special Supplement . Hastings Center Report , 25 (6) : S33 – S36 .
  • Childress , J.F. 1990 . The place of autonomy in bioethics . Hastings Center Report , January/February 12–17
  • Cohen , B. 1997 . Faxed testimony to the Human Subjects Subcommittee of President Clinton's National Bioethics Advisory Commission . 21 November
  • Culver , C.M. and Gert , B. 1982 . Philosophy in Medicine: Conceptual and Ethical Issues in Medicine and Psychiatry , New York : Oxford University Press .
  • Dresser , R. 1994 . Advance directives: Implications for policy. Special Supplement . Hastings Center Report , 24 (6) : S2 – S5 .
  • Dresser , R. 1996 . Mentally disabled research subjects: The enduring policy issues . Journal of the American Medical Association , 276 : 67 – 72 .
  • Dukoff , R. and Sunderland , T. 1997 . Durable power of attorney and informed consent with Alzheinmer's disease patients: A clinical study . American Journal of Psychiatry , 154 : 1070 – 1075 .
  • Freedman , B. 1996 . “ The ethical analysis of clinical trials: New lessons for and from cancer research ” . In The Ethics of Human Research Involving Human Subjects: Facing the 21st Century, , Edited by: Vanderpool , Y.H. Frederick Maryland : University Publishing Group .
  • Haimowitz , S. , Delano , S.J. and Oldham , J.M. 1997 . Uninformed decisionmaking: The case of surrogate research consent . Hastings Center Report , 27 (6) : 9 – 16 .
  • Hilts , P.J. 1998 . Psychiatric researchers under fire . The New York Times , May 11 : B11 Tuesday
  • High , D.M. 1993 . Advance directives and the elderly: A study intervention strategies to increase use . The Gerontologist , 33 : 342 – 349 .
  • Lynn , J. 1991 . Why I don't have a living will . Law, Medicine and Health , 19 : 101 – 104 .
  • MacDonald , M. 1981 . Mystical Bedlam: Madness, Anxiety, and Healing in Seventeenth Century England , Cambridge : Cambridge University Press .
  • Molloy , D.W. , Silberfeld , M. , Darzins , P. , Guyatt , G.H. , Singer , P.A. , Rush , B. , Bedard , M. and Strang , D. 1996 . Measuring capacity to complete an advance directive . Journal of the American Geriatric Society , 44 : 660 – 664 .
  • Moorehouse , A. and Weisstub , D.N. 1996 . Advance directives for research: Ethical problems and responses . International Journal of Law and Psychiatry , 19 (2) : 107 – 141 .
  • National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research . 1979 . The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects in Research , Washington, D.C. : U.S. Government Printing Office .
  • Nature Editorial . 1988 . Where next with psychiatric illness? New research has shown some schizophrenia to be, in part, genetically determined, which promises new insight into psychiatric illness. But the need for enlightened social policies remains urgent . Nature , 336 : 95 – 96 .
  • Neuchterlein , K.H. , Dawson , M.E. , Gitlin , M. , Ventura , J. , Goldstein , M.J. , Snyder , K.S. , Yee , S.M. and Mintz , J. 1992 . Developmental processes in schizophrenic disorders: Longitudinal studies of vulnerability and stress .
  • Kass , N.E. , Sugarman , J. , Faden , R. and Schoch‐Spana , M. 1996 . Trust: The fragile foundation of contemporary biomedical research . Hastings Center Report , 26 : 25 – 29 .
  • Katz , J. 1993 . Human experimentation and human rights . Saint Louis University Law Journal , 38 : 7 – 54 .
  • Ross , W.D. 1930 . The Right and the Good , Oxford : Clarendon Press .
  • Sachs , G.A. , Stocking , C.B. , Stem , R. , Cox , D.M. , Hougham , G. and Sachs , R.S. 1994 . Ethical aspects of dementia research: Informed consent and proxy consent . Clinical Research , 42 : 403 – 412 .
  • Shamoo , A.E. and Irving , D.N. 1993 . Accountability in research using persons with mental illness . Accountability in Research , 3 : 1 – 17 .
  • Silberfeld , M. , Nash , C. and Singer , P.A. 1993 . Capacity to complete an advance directive . Journal of the American Geriatric Society , 41 : 1141 – 1143 .
  • Schwartz , J. October 8 1996 . Initial Report of the Attorney General's Research Working Group , October 8 , State of Maryland : Office of the Attorney General .
  • SUPPORT Principal Investigators . 1995 . A controlled trial to improve care for the seriously ill hospitalized patients: The study to understand prognosis for outcomes and risks of treatments (SUPPORT) . The Journal of the American Medical Association , 274 (20) : 1591 – 1598 .
  • Whitaker , R. 1998 . Testing takes human toll . The Boston Globe , November 15 : A1 Sunday,
  • Winick , B.J. 1996 . The MacArthur Treatment Competence Study: Legal and Therapeutic Implications . Psychology, Public Policy, and Law , 2 (1) : 137 – 166 .
  • Corresponding author. Department of Philosophy, Portland State University, POB 751, Portland OR 97207. Tel.: (503) 725–3499. Fax: (503) 725–3693. E‐mail: [email protected].

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.