Effect of public deliberation on attitudes toward surrogate consent for dementia research

S. Y.H. Kim, H. M. Kim, D. S. Knopman, R. De Vries, L. Damschroder, P. S. Appelbaum

Research output: Contribution to journalArticlepeer-review

20 Scopus citations

Abstract

Objective: To assess the informed, deliberative views of the older general public toward a policy of allowing surrogate consent for Alzheimer disease (AD) research. Methods: A total of 503 persons aged 50+ recruited by random digit dialing were randomly assigned to 1 of 3 groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after deliberation session (or equivalent time), and 1 month after the session, regarding their attitudes toward a policy of allowing surrogate consent for research studies of varying risks and potential benefits (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial). Results: At baseline, a policy of surrogate consent for AD research was supported by 55%-91%, depending on the scenario. The education group had a transient increase in support for one research scenario after receiving the information materials. In the deliberation group, support for surrogate consent was higher after deliberation for all scenarios (67% to 97%), with much of the ncrease sustained 1 month after the deliberation session. No changes occurred in the contro group. The study's limitations include self-selection of participants due to the demanding nature of attendance at the deliberation sessions. Conclusions: This sample of the older general public generally supported a policy of surrogate consent for AD research at baseline. Their support increased with democratic deliberation nvolving informed, in-depth exploration of the relevant scientific and ethical issues.

Original languageEnglish (US)
Pages (from-to)2097-2104
Number of pages8
JournalNeurology
Volume77
Issue number24
DOIs
StatePublished - Dec 13 2011

ASJC Scopus subject areas

  • Clinical Neurology

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