Advance directives for non-therapeutic dementia research: Some ethical and policy considerations

Journal of Medical Ethics

Volumn 24, Issue 1, 1998, Pages 32-37

  Berghmans, R L P ^a,b  

^a Institute for Bioethics   (Netherlands)

^b MAASTRICHT UNIVERSITY   (Netherlands)

Author keywords

Advance directives; Dementia research; Ethics

Indexed keywords

DEMENTIA; HEALTH CARE POLICY; HUMAN; IDENTITY; INFORMED CONSENT; LIVING WILL; MEDICAL ETHICS; MEDICAL RESEARCH; MORALITY; REVIEW;

EID: 0031929478     PISSN: 03066800     EISSN: None     Source Type: Journal    
DOI: 10.1136/jme.24.1.32     Document Type: Review

References (25)

1. Dworkin R. Life's dominion. An argument about abortion and euthanasia. London: HarperCollins Publishers, 1993.
2. Dresser RB, Robertson JA. Quality of life and non-treatment decisions for incompetent patients: a critique of the orthodox approach. Law, Medicine & Health Care 1989;17:234-44.
3. American College of Physicians. Cognitively impaired subjects [position paper]. Annals of Internal Medicine 1989;111:843-8.
4. DeRenzo E. Surrogate decision making for severely cognitively impaired research subjects: the continuing debate. Cambridge Quarterly of Healthcare Ethics 1994;3:539-48.
5. Keyserlingk EW, Glass K, Kogan S, Gauthier S. Proposed guidelines for the participation of persons with dementia as research subjects. Perspectives in Biology and Medicine 1995;38: 319-62.
6. Lauter H. Ethics of research with demented patients. In: Bergener M, Brocklehurst JC, Finkel SI, eds. Aging, health, and healing. New York: Springer Publishing Company, 1995: 522-42.
7. Miller BL. Autonomy and proxy consent. In: Melnick VL, Dubler N, eds. Alzheimer's dementia: dilemmas in clinical research. Clifton, New Jersey: Humana Press, 1985: 239-63.
8. Sachs GA. Advance consent for dementia research. Alzheimer Disease and Associated Disorders 1994;8 (supp 4): 19-27.
9. Dresser RB. Mentally disabled research subjects. The enduring policy issues. Journal of the American Medical Association 1996;276: 67-72.
10. Council of Europe, Directorate of Legal Affairs. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: convention on human rights and biomedicine. Strasbourg, 1996
11. Sachs GA, Stocking CB, et al. Ethical aspects of dementia research: informed consent and proxy consent. Clinical Research 1994;42:403-12.
12. Freedman B, Fuks A, Weijer C. In loco parentis. Minimal risk as an ethical threshold for research upon children. Hastings Center Report 1993;23:13-19.
13. Elliott C, Elliott B. From the patient's point of view: medical ethics and the moral imagination. Journal of Medical Ethics 1991;17:173-8.
14. Parfit D. Reasons and persons. Oxford: Oxford University Press, 1984.
15. Dworkin R. Autonomy and the demented self. The Milbank Quarterly 1986; 64 (suppl II): 4-16.
16. Dworkin R. Philosophical issues in senile dementia. Report to the Office of Technology Assessment. Washington, DC, 1986.
17. Dresser R. Dworkin on dementia. Elegant theory, questionable policy. Hastings Center Report 1995;25:32-38.
18. Buchanan AE. Advance directives and the personal identity problem. Philosophy & Public Affairs 1988;17:277-302.
19. Berghmans RLP. The double standard: comparison of ethical problems and standards in research and practice with demented patients. In: Bergener M, Brocklehurst JC, Finkel SI, eds. Aging, health, and healing. New York: Springer Publishing Company, 1995: 511-21.
20. High DM. Advance directives and the elderly: a study of intervention strategies to increase use. Gerontologist 1993; 33:342-9.
21. Menikoff JA, Sachs GA, Siegler M. Beyond advance directives -health care surrogate laws. The New England Journal of Medicine 1992;327:1165-9.
22. Rubin SM, Strull WM, et al. Increasing the completion of the durable power of attorney for health care. A randomized controlled trial. Journal of the American Medical Association 1994;271:209-12.
23. Sachs GA. Increasing the prevalence of advance care planning. Hastings Center Report (special supp) 1994 Nov-Dec: 13-16.
24. Buchanan AE, Brock DW. Deciding for others. The ethics of surrogate decision making. Cambridge: Cambridge University Press, 1989.
25. Jonas H. Philosophical reflections on experimenting with human subjects. In: Beauchamp TL, Walters LR, eds. Contemporary issues in bioethics [3rd ed]. Belmont, California: Wadsworth, 1989: 432-40.