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Public preferences for the return of research results in genetic research: a conjoint analysis

Recent policies specifying criteria about which individual research results to return leave considerable discretion to researchers. This study investigated the types of results that the public wants when participating in genetic research and whether preferences differ based on willingness to partici... Full description

Journal Title: Genetics in medicine 2014, Vol.16 (12), p.932-939
Main Author: Murphy Bollinger, Juli
Other Authors: Bridges, John F P , Mohamed, Ateesha , Kaufman, David
Format: Electronic Article Electronic Article
Language: English
Subjects:
Publisher: United States
ID: ISSN: 1098-3600
Link: https://www.ncbi.nlm.nih.gov/pubmed/24854226
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title: Public preferences for the return of research results in genetic research: a conjoint analysis
format: Article
creator:
  • Murphy Bollinger, Juli
  • Bridges, John F P
  • Mohamed, Ateesha
  • Kaufman, David
subjects:
  • Access to Information
  • Adolescent
  • Adult
  • Aged
  • Article
  • Choice Behavior
  • Cohort Studies
  • conjoint analysis
  • Data Collection
  • Female
  • genetic
  • Genetic Research - legislation & jurisprudence
  • Humans
  • individual results
  • Male
  • Middle Aged
  • Patient Participation
  • Public Opinion
  • Public Policy
  • public preferences
  • Research Design
  • United States
  • Young Adult
ispartof: Genetics in medicine, 2014, Vol.16 (12), p.932-939
description: Recent policies specifying criteria about which individual research results to return leave considerable discretion to researchers. This study investigated the types of results that the public wants when participating in genetic research and whether preferences differ based on willingness to participate. A representative survey of US adults used conjoint analysis to measure priorities among eight principles of a results policy for a proposed large-cohort study. Policy preferences were measured using 12 tasks in which respondents chose between two groupings of the policy principles. Stratified analysis compared those self-identified as likely or unlikely to participate in genomic research. Of 1,515 respondents, 56% would participate in the proposed study. All eight principles were positively endorsed by participants (all P < 0.003), with priority placed on providing results at no cost and returning well-validated results for treatable and serious diseases. Providing detailed result reports was more highly valued than providing staff to explain results (P = 0.0005). Receiving results about major changes in risk was marginally disvalued by those unlikely to participate (P = 0.35). Public preferences for well-validated individual research results for serious, actionable diseases agree with emerging recommendations. However, because preferences for receiving individual research results vary, some choices should be offered to research participants.
language: eng
source:
identifier: ISSN: 1098-3600
fulltext: no_fulltext
issn:
  • 1098-3600
  • 1530-0366
url: Link


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descriptionRecent policies specifying criteria about which individual research results to return leave considerable discretion to researchers. This study investigated the types of results that the public wants when participating in genetic research and whether preferences differ based on willingness to participate. A representative survey of US adults used conjoint analysis to measure priorities among eight principles of a results policy for a proposed large-cohort study. Policy preferences were measured using 12 tasks in which respondents chose between two groupings of the policy principles. Stratified analysis compared those self-identified as likely or unlikely to participate in genomic research. Of 1,515 respondents, 56% would participate in the proposed study. All eight principles were positively endorsed by participants (all P < 0.003), with priority placed on providing results at no cost and returning well-validated results for treatable and serious diseases. Providing detailed result reports was more highly valued than providing staff to explain results (P = 0.0005). Receiving results about major changes in risk was marginally disvalued by those unlikely to participate (P = 0.35). Public preferences for well-validated individual research results for serious, actionable diseases agree with emerging recommendations. However, because preferences for receiving individual research results vary, some choices should be offered to research participants.
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subjectAccess to Information ; Adolescent ; Adult ; Aged ; Article ; Choice Behavior ; Cohort Studies ; conjoint analysis ; Data Collection ; Female ; genetic ; Genetic Research - legislation & jurisprudence ; Humans ; individual results ; Male ; Middle Aged ; Patient Participation ; Public Opinion ; Public Policy ; public preferences ; Research Design ; United States ; Young Adult
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abstractRecent policies specifying criteria about which individual research results to return leave considerable discretion to researchers. This study investigated the types of results that the public wants when participating in genetic research and whether preferences differ based on willingness to participate. A representative survey of US adults used conjoint analysis to measure priorities among eight principles of a results policy for a proposed large-cohort study. Policy preferences were measured using 12 tasks in which respondents chose between two groupings of the policy principles. Stratified analysis compared those self-identified as likely or unlikely to participate in genomic research. Of 1,515 respondents, 56% would participate in the proposed study. All eight principles were positively endorsed by participants (all P < 0.003), with priority placed on providing results at no cost and returning well-validated results for treatable and serious diseases. Providing detailed result reports was more highly valued than providing staff to explain results (P = 0.0005). Receiving results about major changes in risk was marginally disvalued by those unlikely to participate (P = 0.35). Public preferences for well-validated individual research results for serious, actionable diseases agree with emerging recommendations. However, because preferences for receiving individual research results vary, some choices should be offered to research participants.
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