Beyond competence: advance directives in dementia research

Monash Bioethics Review 33 (2-3):167-180 (2015)
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Abstract

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to decide offers a valuable opportunity to authorize research, by using an advance research directive. Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects.

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References found in this work

Deciding for Others: The Ethics of Surrogate Decision Making.Allen E. Buchanan & Dan W. Brock - 1989 - New York: Cambridge University Press. Edited by Dan W. Brock.
Enough: The Failure of the Living Will.Angela Fagerlin & Carl E. Schneider - 2004 - Hastings Center Report 34 (2):30-42.
Consent and end of life decisions.J. Harris - 2003 - Journal of Medical Ethics 29 (1):10-15.
Advance consent, critical interests and dementia research.Tom Buller - 2015 - Journal of Medical Ethics 41 (8):701-707.
Autonomy and the demented self.Ronald Dworkin - 2006 - In Stephen A. Green & Sidney Bloch (eds.), An Anthology of Psychiatric Ethics. Oxford University Press. pp. 293--6.

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