How Important Is 'Accuracy' of Surrogate Decision-Making for Research Participation?

Scott Y H Kim, H. Myra Kim, Kerry A. Ryan, Paul S. Appelbaum, David S Knopman, Laura Damschroder, Raymond De Vries

Research output: Contribution to journalArticle

18 Citations (Scopus)

Abstract

Background: There is a longstanding concern about the accuracy of surrogate consent in representing the health care and research preferences of those who lose their ability to decide for themselves. We sought informed, deliberative views of the older general public (≥50 years old) regarding their willingness to participate in dementia research and to grant leeway to future surrogates to choose an option contrary to their stated wishes. Methodology/Principal Findings: 503 persons aged 50+ recruited by random digit dialing were randomly assigned to one of three 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 the deliberation session (or equivalent time), and one month after the session, regarding their willingness to participate in dementia research and to give leeway to surrogates, regarding studies of varying risk-benefit profiles (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial). At baseline, 48% (gene transfer scenario) to 92% (drug RCT) were willing to participate in future dementia research. A majority of respondents (57-71% depending on scenario) were willing to give leeway to future surrogate decision-makers. Democratic deliberation increased willingness to participate in all scenarios, to grant leeway in 3 of 4 scenarios (lumbar puncture, vaccine, and gene transfer), and to enroll loved ones in research in all scenarios. On average, respondents were more willing to volunteer themselves for research than to enroll their loved ones. Conclusions/Significance: Most people were willing to grant leeway to their surrogates, and this willingness was either sustained or increased after democratic deliberation, suggesting that the attitude toward leeway is a reliable opinion. Eliciting a person's current preferences about future research participation should also involve eliciting his or her leeway preferences.

Original languageEnglish (US)
Article numbere54790
JournalPLoS One
Volume8
Issue number1
DOIs
StatePublished - Jan 31 2013

Fingerprint

decision making
Decision Making
Decision making
Gene transfer
dementia
Dementia
gene transfer
Research
Spinal Puncture
education
Education
Vaccines
Randomized Controlled Trials
Genes
Aptitude
vaccines
Health Services Research
drugs
Pharmaceutical Preparations
peers

ASJC Scopus subject areas

  • Agricultural and Biological Sciences(all)
  • Biochemistry, Genetics and Molecular Biology(all)
  • Medicine(all)

Cite this

Kim, S. Y. H., Kim, H. M., Ryan, K. A., Appelbaum, P. S., Knopman, D. S., Damschroder, L., & De Vries, R. (2013). How Important Is 'Accuracy' of Surrogate Decision-Making for Research Participation? PLoS One, 8(1), [e54790]. https://doi.org/10.1371/journal.pone.0054790

How Important Is 'Accuracy' of Surrogate Decision-Making for Research Participation? / Kim, Scott Y H; Kim, H. Myra; Ryan, Kerry A.; Appelbaum, Paul S.; Knopman, David S; Damschroder, Laura; De Vries, Raymond.

In: PLoS One, Vol. 8, No. 1, e54790, 31.01.2013.

Research output: Contribution to journalArticle

Kim, SYH, Kim, HM, Ryan, KA, Appelbaum, PS, Knopman, DS, Damschroder, L & De Vries, R 2013, 'How Important Is 'Accuracy' of Surrogate Decision-Making for Research Participation?', PLoS One, vol. 8, no. 1, e54790. https://doi.org/10.1371/journal.pone.0054790
Kim, Scott Y H ; Kim, H. Myra ; Ryan, Kerry A. ; Appelbaum, Paul S. ; Knopman, David S ; Damschroder, Laura ; De Vries, Raymond. / How Important Is 'Accuracy' of Surrogate Decision-Making for Research Participation?. In: PLoS One. 2013 ; Vol. 8, No. 1.
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