Abstract
Persons of diminished capacity, especially those who are still legally competent but are de facto incompetent should still be able to participate in moderately risky research projects that benefit the class of persons with similar diseases. It is argued that this view can be supported with a modified communitarianism, a philosophy ofmedicine that holds that health care is a joint responsibility that meets foundational human needs. The mechanism for obtaining a substituted consent I call ``community consent,'' and distinguish this from the usual family or surrogate consent for treatment. Care givers are included in the community that might consent for an individual who has no identifiable family members.
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References
Bartholome, W.G.: 1996, ‘Ethical issues in pediatric research’, In: H.Y. Vanderpool (ed.), The Ethics of Research Involving Human Subjects: Facing the 21 st Century. Frederick, MD: University Publishing Group, pp. 339-370.
Berg, J.W.: 1996, ‘Legal and ethical complexities of consent with cognitively impaired research subjects: Proposed guidelines’, Journal of Law, Medicine, Ethics 24(1), pp. 18-35.
Biros, M.H., R.J. Lewis, C.M. Olson et al.: 1995, ‘Informed consent in emergency research: Consensus statement from the coalition conference of acute resuscitation and critical care researchers’, JAMA 273(16), pp. 1283-1287.
Campbell, A.V.: 1994, ‘Dependency: The foundational value in medical ethics’, In: K.W.M. Fulford, G. Gillett and J.M. Soskice (eds.), Medicine and Moral Reasoning. Cambridge: Cambridge University Press, pp. 184-192.
Carney, T. and D. Tait: 1997, ‘Adult guardianship: Narrative readings in the “shadow” of the law', paper presented at the XXIInd International Congress on Law & Mental Health, Montreal, Canada, June 19-21, Program: 6.
Cichon, D.E.: 1997, ‘Third party admission of minors into psychiatric facilities', paper presented at the XXIInd International Congress on Law & Mental Health, Montreal, Canada, June 19-21, Program: 10-11.
Cocking, D. and J. Oakley: 1996, ‘Medical experimentation, informed consent and using people’, Bioethics 8(4), pp. 293-311.
DeRenzo, E.: 1994, ‘Surrogate decision making for severely cognitively impaired research subjects: The continuing debate’, Cambridge Quarterly of Healthcare Ethics 3(4), pp. 539-548.
Derkach, L.: 1997, 'supported decision-making as an alternative to guardianship: The B.C. model', paper presented at the XXIInd International Congress on Law & Mental Health, Montreal, Canada, June 19-21, Program: 6-7.
Fethe, C.: 1993, ‘Beyond voluntary consent: Hans Jonas on the moral requirements of human experimentation’, Journal of Medical Ethics 9(2), pp. 99-103.
Friedlander, W.J.: 1995, ‘The evolution of informed consent in American medicine’, Pers Biol Med 38(3), pp. 498-510.
Glaser, J.W.: 1994, Three Realms of Ethics. Kansas City, MO: Sheed & Ward, pp. 26-27.
Glass, K.C. and M. Speyer-Ofenberg: 1996, ‘Incompetent persons as research subjects and the ethics of minimal risk’, Cambridge Quarterly of Healthcare Ethics 5(3), pp. 362-372.
Goldworth, A.: 1995, ‘Standards of disclosure in informed consent’, In: A. Goldworth, W. Silverman, D.K. Stevenson, et al (eds.), Ethics and Perinatology. New York, NY: Oxford University Press, pp. 263-278.
Goodin, R.E.: 1985, Protecting the Vulnerable: A Reanalysis of our Social Responsibilities. Chicago: University of Chicago Press.
Gordon, R.M.: 1997, ‘Adult guardianship and multiculturalism: Some prelimary observations', paper presented at the XXIInd International Congress on Law & Mental Health, Montreal, Canada, June 19-21, Program: 6-7.
Hauerwas. S.: 1986, Suffering Presence. Edinburgh: T & T Clark.
Hewlett, S.: 1996, ‘Consent to clinical research adequately voluntary or substantially influenced?’, Journal of Medical Ethics 22(4), pp. 232-237.
Ijesselmuiden, C.B. and R.R. Faden: 1996, ‘Medical research and the principle of respect for persons in non-western cultures’, In: H.Y. Vanderpool (ed.), The Ethics of Research Involving Human Subjects: Facing the 21 st Century. Frederick, MD: University Publishing Group, pp. 281-301.
Karlawish, J.H.T. and G.A. Sachs: 1997, ‘Research on the cognitively impaired: Lessons and warnings from the emergency research debate’, Journal of the American Geriatric Society 45(4), pp. 474-481.
Kopelman, L.M.: 1995, ‘Research policy, II: Risk and vulnerable groups’, In: W.T. Reich (ed.), Encyclopedia of Bioethics, Revised Edition. New York, NY: Simon & Schuster Macmillan, pp. 2291-2296.
Levine, R.J.: 1995, ‘Adolescents as research subjects without permission of their parents or guardians: Ethical considerations’, Journal of Adolescent Health 17(5), pp. 287-297.
NBAC: 1998, ‘NBAC discusses draft reports’, Professional Ethic Report 11(3), p. 3.
Pellegrino, E.D. and D.C. Thomasma: 1981, A Philosophical Basis of Medical Practice. New York: Oxford University Press.
Pellegrino, E.D. and D.C. Thomasma: 1988, For the Patient's Good: The Restoration of Beneficence in Health Care. New York: Oxford University Press.
Redman, B.K.: 1995, ‘Drug misadventuring as an issue in the ethics of leadership’, American Journal of Health-System Pharmacy 52(4), pp. 404-405.
Shamoo, A.E. (ed.): 1997, Ethics in Neurobiological Research with Human Subjects: The Baltimore Conference on Ethics. Amsterdam: Gordon and Breach.
Shamoo, A.E. and T.L. Keay: 1996, ‘Ethical concerns about relapse studies’, Cambridge Quarterly of Healthcare Ethics 5(3), pp. 373-386.
Sunderland, T. and R. Dukoff: 1996, ‘Informed consent with cognitively impaired patients: an NIMH perspective on the durable power of attorney’, Accountability in Res 4(3-4), pp. 197-206.
Thomasma, D.C.: 1990, ‘The ethics of caring for vulnerable individuals', In Reflections on Ethics. Washington, DC: American Speech-Language-Hearing Assoc., pp. 39-45.
Thomasma, D.C.: 1994, ‘Euthanasia as power and empowerment’, In: R. Bland and A. Bonnicksen (eds.), Medicine Unbound: The Human Body and the Limits of Medical Intervention. New York: Columbia University Press, pp. 210-227.
Thomasma, D.C.: 1996, ‘A communal model for presumed consent for research on the neurologically vulnerable’, Accountability in Res 4(3-4), 227-239.
Thomasma, D.C.:1999, ‘Autonomy, choices, and moral capacity’, 2 nd Annual Pre-Conference, International Academy of Law and Mental Health, Toronto, June 13-14.
United States, Advisory Committee on Human Radiation Experiments: 1995, Final Report. Washington, D.C.: Supt. Of Docs., U.S. G.P.O.
U.S. Food and Drug Administration: 1995, ‘Protection of human subjects; informed consent; proposed rule’, Federal Register 28(6), pp. 533-538.
Verdun-Jones, S. and D.N. Weisstub: 1995, ‘Consent to human experimentation in Quebec: The application of the civil law principle of personal inviolability to protect special populations’, International Journal of Law and Psychiatry 8(2), pp. 163-182.
Warwick, C.: 1995, ‘Informed consent waiver for emergency research’, JAMA 274(15), pp. 1184-1185.
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Thomasma, D.C. A model of community substituted consent for research on the vulnerable. Med Health Care Philos 3, 47–57 (2000). https://doi.org/10.1023/A:1009998118099
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DOI: https://doi.org/10.1023/A:1009998118099