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Substitute consent practices in the face of uncertainty: a survey of Canadian researchers in aging

Published online by Cambridge University Press:  08 August 2013

Gina Bravo ,
Sheila Wildeman ,
Marie-France Dubois ,
Scott YH Kim ,
Carole Cohen ,
Janice Graham  and
Karen Painter
Gina Bravo*
Affiliation:
Department of Community Health Sciences, Université de Sherbrooke, Sherbrooke, Quebec, Canada Research Centre on Aging, University Institute of Geriatrics of Sherbrooke, Sherbrooke, Quebec, Canada
Sheila Wildeman
Affiliation:
Schulich School of Law, Dalhousie University, Halifax, Nova Scotia, Canada
Marie-France Dubois
Affiliation:
Department of Community Health Sciences, Université de Sherbrooke, Sherbrooke, Quebec, Canada Research Centre on Aging, University Institute of Geriatrics of Sherbrooke, Sherbrooke, Quebec, Canada
Scott YH Kim
Affiliation:
Department of Psychiatry and Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, Michigan, USA
Carole Cohen
Affiliation:
Department of Psychiatry, University of Toronto and Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada
Janice Graham
Affiliation:
Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada
Karen Painter
Affiliation:
Research Centre on Aging, University Institute of Geriatrics of Sherbrooke, Sherbrooke, Quebec, Canada
*
Correspondence should be addressed to: Gina Bravo, PhD, Research Centre on Aging, University Institute of Geriatrics of Sherbrooke, 1036 South Belvedere Street, Sherbrooke, QC J1H 4C4, Canada. Phone: +1-819-780-2220, ext. 45244; Fax: +1-819-829-7141. Email: [email protected].
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Abstract

Background:

In Canada and elsewhere, research policies require researchers to secure consent from a legally authorized representative (LAR) for prospective participants unable to consent. Few jurisdictions, however, offer a clear legislative basis for LAR identification. We investigated Canadian researchers’ practices regarding the involvement of decisionally incapacitated participants and tested whether reported practices were associated with (1) researchers’ understanding of the law on third-party authorization of research and (2) their comfort with allowing a family member to consent on behalf of an incapacitated relative.

Methods:

We surveyed researchers in aging from four Canadian provinces about their practices with prospective participants deemed incapable of consent, their understanding of relevant law, and comfort with family consent for research purposes. Understanding and comfort were measured with research vignettes that briefly described hypothetical studies in which an adult who lacks the capacity to consent was invited to participate.

Results:

Many respondents reported soliciting consent from a family member (45.7% for low-risk studies and 10.7% for serious risks studies), even in jurisdictions where such authority is uncertain at law. Researchers’ tendency to solicit family consent was associated with their comfort in doing so, but not with their understanding of the law on substitute consent for research.

Conclusions:

Findings underscore the need to clarify who may authorize an incapacitated adult's participation in research. Meanwhile, people should inform their relatives of their desire to participate or not in research in the event of incapacity, given researchers’ tendency to turn to family for consent, even where not supported by law.

Keywords

dementia researchdecisional incapacitysubstitute consentpostal surveyCanada
Type
Research Article
Information
International Psychogeriatrics , Volume 25 , Issue 11 , November 2013 , pp. 1821 - 1830
Copyright
Copyright © International Psychogeriatric Association 2013 

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