This collaborative, interdisciplinary project provided a timely empirical base for examining societal impacts of two technological developments which are now beginning to intersect: genetic testing and the internet. Specifically, the research examined user perspectives (affected individuals, family members, advocates and health care providers) on direct-to-consumer (DTC) genetic testing using existing and imminent genetic tests for psychiatric disorders as an informative case study, recognising the controversial nature of psychiatric genetic science and of DTC tests sold online. The ways in which such controversies were represented online and how they were discussed by companies and individual users were analysed using new digital methods.The collaboration between Maastricht and Exeter provided an innovative research approach to studying potential impacts of DTC genetic testing on consumers, knowledge production and healthcare systems. This project critically examined the relationships between information, empowerment and geneticization with regard to genetics and mental illness, and assessed the significance of DTC genetic testing in mediating this relationship.
Funded by NWO-ESRC (2010-2012)
Anna Harris & Sally Wyatt (Maastricht University) & Susan Kelly (Exeter University)
Related publications
Harris, A., Wyatt, S. & Kelly, S. (2013). The gift of spit (and the obligation to return it): How consumers of online genetic testing services participate in research, Information, Communication & Society 16(2).
Harris, A., Kelly, S. & Wyatt, S. (2012). Counseling Customers: Emerging Roles for Genetic Counselors in the Direct-to-Consumer Genetic Testing Market, Journal of Genetic Counseling DOI 10.1007/s10897-012-9548-0