Substitute Decision Making about Research: Identifying the Legally Authorized Representative in Four Canadian Provinces

6(1) McGill Journal of Law and Health 289 (2012)

86 Pages Posted: 23 Jun 2013

See all articles by Sheila M. Wildeman

Sheila M. Wildeman

Schulich School of Law

Gina Bravo

Université de Sherbrooke

Marie-France Dubois

Université de Sherbrooke

Carole Cohen

University of Toronto

Janice Graham

Dalhousie University

Karen Painter

Université de Sherbrooke

Suzanne Bellemare

Université de Sherbrooke

Date Written: 2012

Abstract

When an adult is legally incapable of deciding whether to participate in health research, who (if anyone) has the legal authority to make that decision? Furthermore, how well do Canadians with a stake in health research, such as older adults, informal caregivers of older persons with cognitive impairments, researchers in aging, and members of research ethics boards (“REBs”), understand the state of the law on this question? These two interrelated matters are addressed by our study.

We find that the laws of the four provinces we target are frequently unclear as to whether, or in what circumstances, a guardian, proxy appointed under an advance directive, or non-appointed family member may make a substitute decision about another adult’s participation in health research. Moreover, we find that stakeholders in all five subgroups surveyed are frequently mistaken about the state of the law and tend to believe that a non-appointed family member can make such decisions, even when this is not supported by legislation. Our findings indicate a disturbing gap between assumptions and reality regarding the legality of health research in Canada, and give rise to specific concerns about liability on the part of researchers, REB members, and research institutions.

Keywords: Health Law, Mental Health Law, research ethics board, ethics, legally authorized representative, consent, mental health

Suggested Citation

Wildeman, Sheila M. and Bravo, Gina and Dubois, Marie-France and Cohen, Carole and Graham, Janice and Painter, Karen and Bellemare, Suzanne, Substitute Decision Making about Research: Identifying the Legally Authorized Representative in Four Canadian Provinces (2012). 6(1) McGill Journal of Law and Health 289 (2012), Available at SSRN: https://ssrn.com/abstract=2283255

Sheila M. Wildeman (Contact Author)

Schulich School of Law ( email )

6061 University Avenue
Halifax, Nova Scotia B3H 4R2
Canada

Gina Bravo

Université de Sherbrooke ( email )

2500 bd de l'Universite
Sherbrooke, Québec J1K 2R1
Canada

Marie-France Dubois

Université de Sherbrooke ( email )

2500 bd de l'Universite
Sherbrooke, Québec J1K 2R1
Canada

Carole Cohen

University of Toronto ( email )

5 King's College Road
Toronto, Ontario M5S 3G8
Canada

Janice Graham

Dalhousie University ( email )

5849 University Avenue
Halifax, Nova Scotia B3H 4H7
Canada

HOME PAGE: http://www.trru.ca

Karen Painter

Université de Sherbrooke ( email )

2500 bd de l'Universite
Sherbrooke, Québec J1K 2R1
Canada

Suzanne Bellemare

Université de Sherbrooke ( email )

2500 bd de l'Universite
Sherbrooke, Québec J1K 2R1
Canada

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