Personal genetic and genomic information is becoming more widely available and affordable, generating increased discussions on the merits and dangers of direct-to-consumer (DTC) genetic testing and appropriateness of using personal genetic information in various contexts (e.g. clinics, research laboratories, courtrooms, and classrooms). While attention has focused predominately on health-related testing, conversations about DTC genetic ancestry testing and information are intensifying as well. Scholars have highlighted scientific limitations and potential ethical, legal, social, political, and psychologicl implications of genetic ancestry testing and information;however, there is a dearth of empirical data on (1) perceptions and experiences of participants in genetic ancestry testing and (2) public awareness of genetic ancestry tests. The bundling of genetic ancestry testing with health-related genetic testing by some DTC companies raises questions about perceptions of the relationship between ancestry and health. Moreover, genetic ancestry testing exacerbates concerns about misrepresentation of the relationship between ancestry and race;race and genetics;and genetics, ancestry, race, and disease risks. The central objective of this project i to broaden current understanding of the public's comprehension of, attitudes toward, and experiences with genetic ancestry testing and information.
The specific aims are to 1) assess the long-term impact of genetic ancestry testing on prior participants in ancestry testing;2) examine the conceptions and implications of genetic ancestry testing in a community-based setting, and 3) explore perspectives of the general public on genetic ancestry testing and the value of genetic ancestry information in understanding ancestry, race, identity, and health. We will use a mixed methods approach, including (1) in-depth interviews with prior research participants who had genetic ancestry testing six to eight years ago in four US cities;(2) in-depth interviews and focus groups with leaders and members of Freedmen and Tribal communities in Oklahoma;and 3) a national survey on public awareness and perceptions of genetic ancestry testing and information. Empirical data from this study will facilitate a deeper understanding of public perceptions of and responses to genetic ancestry testing and information. The findings will guide development of strategies for enhancing public education about the meaning and implications of different types of genetic information;will be valuable in shaping standards for DTC genetic ancestry testing companies;and will inform policies regarding the regulation and use of genetic ancestry testing and information in other contexts.
Although genetic ancestry testing is typically viewed as "non-health-related" or "recreational", limited data indicate that some consumers seek genetic ancestry information for health reasons. This study will provide individual, community-based, and national data on personal, demographic, cultural, social, and other factors that might influence consumer knowledge, attitudes, behaviors, and experiences concerning genetic ancestry testing and personal genomics as a whole. These findings will inform recommendations for more comprehensive oversight of DTC genetic services, thereby improving accountability in the personal genomics industry.