These eight consent scenarios that describe consent and data sharing arrangements were used to assess respondents' opinions of the conduct of a precision medicine cohort study on genes and environment. In the original study, respondents were shown one, randomly selected scenario, and were asked if they would “consent to share your samples and information with researchers in this manner”.
In the original study, Briscoe and colleagues asked participants how each of twelve, randomly ordered policies (e.g., employee code of conduct, right to request deletion of data, warrant protection of government access, etc.) would affect their willingness to provide their genomic data.
In the linked study, De Vries and colleagues provided participants with a description of a fictional biobank and a description of blanket consent. They measured respondent comprehension of this information using 6 true/false questions and assessed willingness to donate under a blanket consent model. Followng presentation of participants with seven research scenarios that may present moral concerns, they reassessed willingness to donate under blanket consent, "even if" their samples were used for the research described.
In the linked study, De Vries and colleagues provided participants with a description of a fictional biobank and a description of blanket consent. They measured respondent comprehension of this information using 6 true/false questions and assessed willingness to donate under a blanket consent model. Followng presentation of participants with seven research scenarios that may present moral concerns, they reassessed willingness to donate under blanket consent, "even if" their samples were used for the research described.
Hiratsuka and colleagues developed these six scenarios for use in small group discussions focused on their implications. Scenarios are nonpartisan and explore genetic research, direct-to-consumer genetic tests, and return of results.
McWhirter and colleagues report the development and validation of 6 scenarios based on actual genomic data sharing pratices in Australia. These scenarios could be used to inform the decision-making of data access and research ethics committees by enhancing understanding of the downstream uses of genetic sequence information. Scenarios 1 - 6 are available in Table 3 of the linked publication.