Research Tools

The “Qualitative Story Deck,” (QSD) is an interactive elicitation technique desgined to explore the willingness of African Americans (and others) to participate in health research involving biospecimens. Participants choose cards and create a research scenario which can vary on the basis of four details: 1. race/ethnicity of the researcher, 2. research goal, 3. biospecimen requested, and 4. institutional affiliation. The researcher can then ask participants to decide whether they would participate in the research project and how they came to the decision.

A pre- and post-test questionnaire that measures changes in the knowledge and attitudes of physicians who have been administered pharmacogenetic testing is available in the supporting information section of the linked publication in both English and Korean. The survey includes items for demographic information, clinical history, attitudes towards adverse drug reactions, experience with clinical genomics, attitudes toward and experience with pharmacogenomics, price expectations for pharmacogenomics testing, and interpretation of the value of the pharmacogenomics report.

This survey that measures genomics knowledge and attitudes toward the role of public health professionals in implementing public health genomics for public health professionals. The survey is designed to be administereed to public health professionals. It includes items that elicit professional details, professional activity, knowledge of and attitudes toward genetic testing and genetic services delivery, and attitudes toward the role of public health professionals in public health genomics.

This survey asks participants to supply demographic information (including educational level, household income, and race), rate their familiarity with precision medicine terms, indicate their attitudes to precision medicine, identify sources of medical information and potential barriers to participation in research, and complete a measure of trust in research and researchers. The survey is available in Table 1 and in the supporting information of the linked publication.

Hall and colleagues report the development and validation of 12-item survey and a short form (4-item) survey designed to measure trust in medical researchers. Final scale items are available in Table 4 of the linked publication.

Mainous and colleagues report the development and validation of the 12-item Trust in Medical Resesearchers Scale. This scale is designed to be self-administered. Several scale items assess concerns about research participation that may be unique to populations with documented mistrust in medicine. It could be used to assess barriers to participation in research and inform recruitment strategies. Item descriptions are available in Table 1 of the linked publication.

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.

This focus group guide (see the methods, focus groups section of the linked article) was designed to assess interest in a research ethics consultation service. It includes a set of questions for biomedical researchers designed to assess their perceptions of ethical and social questions related to their research, ideas about the role of bioethicists, the kinds of research that is controversial, the role of scientists in dealing with controversy, and other topics.

This survey was designed for use with the 10-minute video, Whole Genome Sequencing and You (available in this database). It can be used to collect demographic information and participant attitudes toward WGS.

Clarke and colleagues developed the Genetic Knowledge Index using a combination of existing measures, including one from another CSER project for use in a study that assessed willingness to pay for expanded carrier screening. The index is a set of 9 yes or no questions includings items that assess participant understanding of the test results.