Understanding the Lived Experience of Genetic Testing

Millions of people have undergone direct-to-consumer genetic and DNA testing to receive health and ancestry information. This project examines how customers of direct-to-consumer respond to and/or alter their decision-making about health and other risks when presented with their results. Specifically, the project explores whether unexpected results influence the decisions customers make about their health risks, family and kinship relationships, and other patterns of behavior. The research will produce a community-based network of people impacted by unexpected results to improve communication about the science and the lived experiences of genetic testing. The community-based research design and network of communication expands the participation of STEM learning for communities and the public. To investigate the impacts of unexpected DNA results, the researchers use a mixed methods approach that includes interviews, behavioral observations, and content analysis of online communication and social media. Using these methods, this research tests for the impacts of DNA results on family and other social relationships, and health decision-making. The research makes significant contributions to medical anthropology, the study of health decision-making, the social science of genetic testing, and to community-based science. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.