Democratic Deliberation and Surrogate Consent for Dementia Research

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Enrolling adults with decisional incapacity in dementia research based on surrogate permission (surrogate-based research, or SBR) lacks widely accepted policy guidelines, despite decades of controversy. This project assesses the views of caregivers and the general public regarding SBR. It uses an innovate method called democratic deliberation to obtain the educated, deliberative opinions regarding the appropriateness and limits of SBR. The results will inform the work of research ethics policymakers, policy-implementers (such as IRBs), researchers in their recruitment of incapacitated subjects, and family members who may act as surrogates for research consent.

Funding:                                                                                                                                      R01-AG029550                                                                                                                              &                                                                                                                                                  The Greenwall Foundation