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Comfort with proxy consent to research involving decisionally impaired older adults: do type of proxy and risk-benefit profile matter?

Published online by Cambridge University Press:  24 March 2011

Marie-France Dubois ,
Gina Bravo ,
Janice Graham ,
Sheila Wildeman ,
Carole Cohen ,
Karen Painter  and
Suzanne Bellemare
Marie-France Dubois*
Affiliation:
Department of Community Health Sciences, University of Sherbrooke, Sherbrooke, Quebec, Canada Research Centre on Aging, University Institute of Geriatrics of Sherbrooke, Sherbrooke, Quebec, Canada
Gina Bravo
Affiliation:
Department of Community Health Sciences, University of Sherbrooke, Sherbrooke, Quebec, Canada Research Centre on Aging, University Institute of Geriatrics of Sherbrooke, Sherbrooke, Quebec, Canada
Janice Graham
Affiliation:
Department of Bioethics, Dalhousie University, Halifax, Nova Scotia, Canada
Sheila Wildeman
Affiliation:
Dalhousie Law School, Halifax, Nova Scotia, Canada
Carole Cohen
Affiliation:
Department of Psychiatry, University of Toronto and Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada
Karen Painter
Affiliation:
Research Centre on Aging, University Institute of Geriatrics of Sherbrooke, Sherbrooke, Quebec, Canada
Suzanne Bellemare
Affiliation:
Research Centre on Aging, University Institute of Geriatrics of Sherbrooke, Sherbrooke, Quebec, Canada
*
Correspondence should be addressed to: Professor Marie-France Dubois, PhD, Department of Community Health Sciences, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 3001 12th Avenue North, Sherbrooke, QC, Canada, J1H 5N4. Phone: +1 819-820-6868, ext. 12572; Fax: +1 819-564-5397. Email: Marie-France.Dubois@USherbrooke.ca.
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Abstract

Background: Dementia research often requires the participation of people with dementia. Obtaining informed consent is problematic when potential participants lack the capacity to provide it. We investigated comfort with proxy consent to research involving older adults deemed incapable of this decision, and examined if comfort varies with the type of proxy and the study's risk-benefit profile.

Methods: We surveyed random samples of five relevant groups (older adults, informal caregivers, physicians, researchers in aging, and Research Ethics Board members) from four Canadian provinces. Respondents were presented with scenarios involving four types of proxies (non-assigned, designated in a healthcare advance directive with or without instructions specific to research participation, and court-appointed). Given a series of risk-benefit profiles, respondents indicated whether they were comfortable with proxy consent to research for each scenario.

Results: Two percent of the respondents felt proxy consent should never be allowed. In all groups, comfort depended far more on the risk-benefit profile associated with the research scenario than with type of proxy. For research involving little or no risk and potential personal benefits, over 90% of the respondents felt comfortable with substitute consent by a designated or court-appointed proxy while 80% were at ease with a non-assigned proxy. For studies involving serious risks with potentially greater personal benefits, older adults and informal caregivers were less comfortable with proxy consent.

Conclusions: A large majority of Canadians are comfortable with proxy consent for low-risk research. Further work is needed to establish what kinds of research are considered to be low risk.

Keywords

dementia researchsubstitute consentcourt-appointmentadvance directivesrisk-benefit ratioopinionspostal surveyCanada
Type
Research Article
Information
International Psychogeriatrics , Volume 23 , Issue 9 , November 2011 , pp. 1479 - 1488
Copyright
Copyright © International Psychogeriatric Association 2011

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