Inteview Guide: Knowledge and Attitudes about Privacy and Secondary Data Use among African-Americans Using Direct-to-Consumer Genetic Testing
Year:
Ziegler and colleagues developed this semi-structured, qualitative, interview guide to elicit perspectives from Black/African-American participants on direct-to-consumer genetic testing. Topics include participants' experiences with ordering DTC GT kits, using the kits, and receiving their DNA test results. Questions also explore the participants' knowledge of genetic data privacy (for example, if they know whether DTC GT companies could sell their data) and ask how they would feel if their genetic data were used in different scenarios (for example, by a healthcare facility for medical research or a DTC GT company.)
Research Population:
Citation:
Ziegler, E., Mladucky, J., Baty, B., Anderson, R., & Botkin, J. (2022). Knowledge and attitudes about privacy and secondary data use among African-Americans using direct-to-consumer genetic testing. Public Health Genomics, 25, 164-173.