Opinions Regarding Who Should Consent to Research on Behalf of an Older Adult Suffering from Dementia

Abstract

In many jurisdictions, consent to research on a decisionally incompetent adult can be provided only by the legal guardian. Yet, few cognitively impaired older adults are legally represented. This article reports on a postal survey eliciting the opinions of concerned individuals regarding who should decide whether an incompetent older adult will participate in research. Four groups of people were targeted by the survey: older adults, informal caregivers of cognitively impaired patients, researchers in ageing, and members of institutional review boards. Opinions were similar across the four groups and varied with the degree of risk involved in the study. In the absence of risk, most respondents did not think that the surrogate decision-maker must be legally appointed. As the amount of risk increased, the proportion of respondents who believed consent could be provided by a significant other without legal authority decreased, while that against soliciting cognitively impaired patients tended to increase.

Keywords

ethics committee informal caregiver older adult researcher substituted consent

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