Surrogate consent to non-beneficial research: erring on the right side when substituted judgments may be inaccurate

Theoretical Medicine and Bioethics 37 (2):149-160 (2016)

Abstract
Part of the standard protection of decisionally incapacitated research subjects is a prohibition against enrolling them unless surrogate decision makers authorize it. A common view is that surrogates primarily ought to make their decisions based on what the decisionally incapacitated subject would have wanted regarding research participation. However, empirical studies indicate that surrogate predictions about such preferences are not very accurate. The focus of this article is the significance of surrogate accuracy in the context of research that is not expected to benefit the research subject. We identify three morally relevant asymmetries between being enrolled and not being enrolled in such non-beneficial research, and conclude that when there is a non-negligible probability that surrogates’ predictions are wrong, it will generally be better to err on the side of not authorizing enrollment.
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DOI 10.1007/s11017-016-9363-y
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Convention on the Rights of Persons with Disabilities.United Nations - 2009 - Jahrbuch für Wissenschaft Und Ethik 14 (1):203-226.

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