IRB: Ethics & Human Research
Surrogate Consent for Dementia Research: Factors Influencing Five Stakeholder Groups from the SCORES Study
This paper reports data from a postal survey conducted among five groups of Canadians: community-dwelling adults aged 65 and over (n=679), informal caregivers of cognitively-impaired older adults (n=384), physicians (n=495), researchers of aging (n=177), and institutional review board (IRB) members (n=325). Survey participants ranked factors that would influence their decision to let a decisionally-incapacitated close relative participate in a hypothetical study. Seven factors were investigated including the prospect of benefits, the possibility of adverse events, and the reputation of the researcher. The prospect of direct benefits to the incapacitated relative was the most influential factor in surrogate decision-making for 55.8% of the respondents, followed by the possibility of adverse events (30.0%). One in four respondents considered the reputation of the researcher to be the least influential factor. Overall, older adults, informal caregivers and physicians tended to favor direct benefits more than risks, while the reverse was observed among researchers and most IRB members.
Gina Bravo, Scott Y.H. Kim, Marie-France Dubois, Carole A. Cohen, Sheila M. Wildeman, and Janice E. Graham, “Surrogate Consent for Dementia Research: Factors Influencing Five Stakeholder Groups from the SCORES Study,” IRB: Ethics & Human Research 35, no. 4 (2013): 1-11.