Research with Decisionally Incapacitated Older Adults: Practices of Canadian Research Ethics Boards

32(6) IRB: Ethics & Human Research (2010): 1-8

Posted: 14 Jul 2012

See all articles by Gina Bravo

Gina Bravo

Université de Sherbrooke

Marie-France Dubois

Université de Sherbrooke

Sheila M. Wildeman

Schulich School of Law

Janice Graham

Dalhousie University

Carole Cohen

University of Toronto

Karen Painter

Université de Sherbrooke

Suzanne Bellemare

Université de Sherbrooke

Date Written: 2010

Abstract

Older adults who are incapable of giving informed consent to participate in dementia research require special regulatory protection. We investigated the practices of Canadian research ethics boards (REBs) regarding research protocols that may involve these individuals. We also explored the opinions of REB chairs on related issues, including research advance directives and longitudinal studies. The data were collected through telephone interviews with 46 chairs from four Canadian provinces. We observed great variability in practices and opinions, as well as some instances of REBs not complying with prevailing ethical and legal norms. These findings reflect, at least in part, significant regulatory gaps and related uncertainties about the terms attached to the approval of research protocols that may involve decisionally incapacitated adults. We conclude that clearer and more comprehensive regulatory criteria are required for research with this population.

Keywords: informed consent to research, competence and capacity, vulnerable populations, risks and benefits to research participants, institutional review boards, research ethics boards

Suggested Citation

Bravo, Gina and Dubois, Marie-France and Wildeman, Sheila M. and Graham, Janice and Cohen, Carole and Painter, Karen and Bellemare, Suzanne, Research with Decisionally Incapacitated Older Adults: Practices of Canadian Research Ethics Boards (2010). 32(6) IRB: Ethics & Human Research (2010): 1-8, Available at SSRN: https://ssrn.com/abstract=2104329

Gina Bravo (Contact Author)

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

Sheila M. Wildeman

Schulich School of Law ( email )

6061 University Avenue
Halifax, Nova Scotia B3H 4R2
Canada

Janice Graham

Dalhousie University ( email )

5849 University Avenue
Halifax, Nova Scotia B3H 4H7
Canada

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

Carole Cohen

University of Toronto ( email )

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

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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