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Centre for Policy on Ageing | |
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Substitute consent practices in the face of uncertainty
— a survey of Canadian researchers in aging | | Author(s) | Gina Bravo |
| Journal title | International Psychogeriatrics, vol 25, no 11, November 2013 |
| Publisher | Cambridge University Press, November 2013 |
| Pages | pp 1821-1830 |
| Source | journals.cambridge.org/ipg |
| Keywords | Cognitive impairment ; Mental disorder ; Law ; Family care ; Research ; Participation ; Canada. |
| Annotation | 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. The present study 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 authorisation of research and (2) their comfort with allowing a family member to consent on behalf of an incapacitated relative. The study surveyed researchers in ageing 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 lacked the capacity to consent was invited to participate. 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 was 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. These findings underscore the need to clarify who may authorise 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. (JL). |
| Accession Number | CPA-131025213 A |
| Classmark | E4: E: VR: P6:SJ: 3A: TMB: 7S |
Data © Centre for Policy on Ageing |
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| ...from the Ageinfo database published by Centre for Policy on Ageing. |
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