Using data to improve surrogate consent for clinical research with incapacitated adults.

Journal of Empirical Research on Human Research Ethics : JERHRE
Emily Abdoler, David Wendler

Abstract

Current practice relies on surrogates to enroll incapacitated adults in research. Yet, it is unclear to what extent this practice protects adults who have lost the ability to consent for themselves. To address this question, we conducted two literature searches to identify articles which report empirical data on three issues central to protecting adults who have lost the ability to consent: (1) adults' willingness to participate in research should they lose the ability to consent; (2) adults' willingness to allow a surrogate to make research decisions for them; and (3) the extent to which surrogates' enrollment decisions are consistent with their charges' preferences and values. These searches identified 21 articles, representing 20 distinct datasets. The data indicate that many adults are willing to participate in research should they lose the ability to consent, and many are willing to allow their family members to make research decisions for them if they become incapacitated. The data also raise concern that surrogates may be making research enrollment decisions that, in some cases, are inconsistent with their charges' preferences and values. These findings suggest that modifications to current practice should be considered ...Continue Reading

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Citations

May 1, 2016·Theoretical Medicine and Bioethics·Mats Johansson, Linus Broström
Mar 10, 2015·Journal of Empirical Research on Human Research Ethics : JERHRE·Dragana Bolcic-JankovicBradley D Freeman
Oct 10, 2019·The New England Journal of Medicine·Nikola Biller-Andorno, Armin Biller
Sep 17, 2020·Ethics & Human Research·M Ariel CascioEric Racine
Aug 23, 2019·Journal of the American Geriatrics Society·Christopher R CarpenterJoe Verghese
Jul 1, 2020·European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies·A G Jaramillo VélezP Modamio

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