How important is 'accuracy' of surrogate decision-making for research participation?

<h4>Background</h4>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)...

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Autores principales:	Scott Y H Kim, H Myra Kim, Kerry A Ryan, Paul S Appelbaum, David S Knopman, Laura Damschroder, Raymond De Vries
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2013
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/56e540574b384f2581529fbd913b6749
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spelling	oai:doaj.org-article:56e540574b384f2581529fbd913b67492021-11-18T07:59:14ZHow important is 'accuracy' of surrogate decision-making for research participation?1932-620310.1371/journal.pone.0054790https://doaj.org/article/56e540574b384f2581529fbd913b67492013-01-01T00:00:00Zhttps://www.ncbi.nlm.nih.gov/pmc/articles/pmid/23382969/?tool=EBIhttps://doaj.org/toc/1932-6203<h4>Background</h4>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.<h4>Methodology/principal findings</h4>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.<h4>Conclusions/significance</h4>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.Scott Y H KimH Myra KimKerry A RyanPaul S AppelbaumDavid S KnopmanLaura DamschroderRaymond De VriesPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 8, Iss 1, p e54790 (2013)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Scott Y H Kim H Myra Kim Kerry A Ryan Paul S Appelbaum David S Knopman Laura Damschroder Raymond De Vries How important is 'accuracy' of surrogate decision-making for research participation?
description	<h4>Background</h4>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.<h4>Methodology/principal findings</h4>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.<h4>Conclusions/significance</h4>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.
format	article
author	Scott Y H Kim H Myra Kim Kerry A Ryan Paul S Appelbaum David S Knopman Laura Damschroder Raymond De Vries
author_facet	Scott Y H Kim H Myra Kim Kerry A Ryan Paul S Appelbaum David S Knopman Laura Damschroder Raymond De Vries
author_sort	Scott Y H Kim
title	How important is 'accuracy' of surrogate decision-making for research participation?
title_short	How important is 'accuracy' of surrogate decision-making for research participation?
title_full	How important is 'accuracy' of surrogate decision-making for research participation?
title_fullStr	How important is 'accuracy' of surrogate decision-making for research participation?
title_full_unstemmed	How important is 'accuracy' of surrogate decision-making for research participation?
title_sort	how important is 'accuracy' of surrogate decision-making for research participation?
publisher	Public Library of Science (PLoS)
publishDate	2013
url	https://doaj.org/article/56e540574b384f2581529fbd913b6749
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How important is 'accuracy' of surrogate decision-making for research participation?

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