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Research Tool
Willingness to Participate in a Precision Medicine Cohort Study, Survey
This survey assesses support for and willingness to take part in a cohort study, aspects of participation, study oversight (including participant involvement in governance), and the return of… -
Research Tool
Sharing Power with Communities in Priority-Setting for Health Research Projects: A Toolkit
Pratt developed Sharing Power with Communities in Priority-Setting for Health Research Projects (a set of four worksheets and a companion document available in this database), following consultation… -
Research Tool
Sharing Power with Communities in Priority-Setting for Health Research Projects: Ethical Toolkit Worksheet 1
Pratt developed Sharing Power with Communities in Priority-Setting for Health Research Projects (a set of four worksheets and a companion document available in this database), following consultation… -
Research Tool
Sharing Power with Communities in Priority-Setting for Health Research Projects: Ethical Toolkit Worksheet 2
Pratt developed Sharing Power with Communities in Priority-Setting for Health Research Projects (a set of four worksheets and a companion document available in this database), following consultation… -
Research Tool
Measure of Genetics Knowledge
This measure of knowledge about genetics has 21-items completed on a binary scale. Performance can be scored by summing the number of correct answers (chance performance is 10.5). -
Research Tool
Research Scenarios Associated with Moral Concerns
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… -
Research Tool
Social Policy Options forBiobank Consent
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… -
Research Tool
Information About Genomic Databases, Video Transcript
Briscoe and colleagues primed repondents ahead of a survey that assessed public attitudes toward genomic data by providing them with information about genomic databases via a 3-minute video. The… -
Research Tool
Genomic Data Governance Policy Statements
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… -
Research Tool
Scenarios on Genetic Research, Testing, and Return of Results
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…