Research Tools

Clarke and colleagues created this measure of support of science and technology (SST) for use in a study that assessed willingness to pay for expanded carrier screening. The measure is a set of 10 yes or no questions that assesses trust in medicine, importance of carrier status results, and willingness to share test results with clinicians.

Sayeed and colleagues developed this survey for use in the Project Baseline Health Study, which collected a variety of participant data, including genetic test results. The survey includes questions about which results participants would be willing to share with clinical professionals (e.g., doctor, nurse), confidence in the safety of their personal health information, perception of the potential benefits, feelings upon getting results, interest in future test results, and other topics.

Ploug and Holm developed this choice based conjoint survey to record participant preferences about whole genome and exome sequencing results reporting in three scenarios with seven different attributes. The English-language survey was developed for use with the general, Danish population. An example of a choice task with 3 concepts is available in Figure 1 of the linked publication.

This survey assesses views on aspects of the consent process, including willingness to share medical information and DNA for different research purposes, including controversial areas of research.

This 20-item survey by Guerrini and colleagues can be used to assess public opinion on police access to genetic genealogy databases. The survey assesses participant characteristics and views on the purposes that law enforcement should be allowed to search genealogical websites and social media accounts, whether law enforcement should be allowed to require direct-to-consumer testing companies to reveal information about their customers, and other topics.

This version of the Genetic Essentialism Scale for Race (GESR) measures beliefs about the relationship between genes and race with 9 items. Participant responses are recorded on a four-point Likert scale.

This topic guide can be used to interview research participants on their perceptions of recall by genotype research, which recruits on the basis of genotype. Topics include understandings of RbG research, expectations about recruitment, and preferences for the communication of research findings.

This survey can be used to collect respondent characteristics, attitudes about the genetic modification (GM) of cattle, the perceived effectiveness of GM modifications, knowledge of GM, and attitudes toward animals.

This interview guide was developed to elicit African researchers experiences in international health research consortia; perceived benefits and risks of participation, and their recommendations for the conduct of research in the African setting.

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.