Research Tools

This 18-item opinion poll includes questions designed to assess participant opinion on genetics research, genetic tests, and results. The poll focuses on familiar medical encounters and services.

Chen and colleagues developed this qualitative interview guide to explore the topic of family health history with Chinese Americans in the United States. The English language version of the interview questions are available in the Data Collection and Measures section of the linked article. These include questions about the scope, accuracy, and importance of family health history and willingness to discuss health history with family members and physicians.

This scale contains 24 items and assesses the degree to which people have essentialist views of genetic causes. Responses can either be completed on a scale that ranges from 1 (Strongly Disagree) to 5 (Strongly Agree) or from 1 (Strongly Disagree) to 7 (Strongly Agree).

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. The authors also presented participants with five consent policies ranging from blanket to study-by-study consent and asked participants to identify whether they foudn these policies acceptable. Please see the Survey Measures section of the linked article for additional details and find the moral concerns scenarios in Table 1 and consent policy in Table 2.

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. The authors also presented participants with five consent policies ranging from blanket to study-by-study consent and asked participants to identify whether they foudn these policies acceptable. Please see the Survey Measures section of the linked article for additional details and find the moral concerns scenarios in Table 1 and consent policy in Table 2.

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 video transcript includes factual information focused on the commercial value of personal information (including genomic sequence data) and privacy risks for individuals providing data. The video was followed by 3 comprehension assessment questions.

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.

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”. The scenarios vary by consent structure (broad, study by study, menu, or dynamic consent) and by the presence or absence of a statement indicating that cohort participants would “have access to a website where you would be able to see what studies are going on, which studies are using your information, and what each study has learned.”