Selling genetic tests online: User perspectives on direct to consumer psychiatric genetic tests
Susan Kelly, Sally Wyatt and Anna Harris
BackgroundThis research examines the intersection of two important emerging technologies: genetic testing and the internet. The latter provides consumers with direct access to genetic tests and personal genetic information, potentially unmediated by healthcare professionals. These developments are raising critical questions about patient empowerment, 'democratization' of science, impacts on health systems, regulation, and the ability of consumers to make health care and lifestyle decisions on their own, or in improved partnership with healthcare providers. The current and imminent introduction of genetic tests for serious psychiatric disorders presents an important arena for examining these and related questions regarding the nature and impacts of direct to consumer (DTC) access to diagnostic and predictive individual genetic information.
The project is intended to:
1. Evaluate claims concerning consumer empowerment from direct access to personal genetic health information from consumer, patient and provider perspectives.
2. Examine DTC genetic testing internet sites in terms of how products, genetic science, consumers and health information are represented. This analysis will take the form of both content analysis and media-specific analyses, and address what media-specific strategies are engaged by such sites with regard to consumer action.
3. Examine claims and promises being made by developers of psychiatric genetic tests. What tests are likely to emerge in the foreseeable future, in what contexts, and with what promises and limitations?
4. Examine how different user communities, including individuals affected with psychiatric disorders as well as their family members, advocates, and healthcareprofessionals regard direct-to-consumer genetic testing, specifically with regard to genetic tests for psychiatric disorders. What are the perspectives, concerns, and interests of user communities with regard to these technologies?
5. From the above, evaluate: a) relationships between DTC genetic testing technologies and forms of consensus and controversy in genetic knowledge production, b) potential uses and impacts of DTC genetic testing particularly in psychiatric genetics on individuals and families, and c) potential health system impacts.
Dr Anna Harris worked in Maastricht until December 2011 and then in Exeter, exploring a range of innovative methodologies for researching internet sites including archival approaches, and conducting in-depth content analysis of DTC websites and related blogs. An emerging focus is on implications of DTC genetic testing provision for genetic counselling.
Wyatt, Sally, Harris, Anna, Adams, Samantha, and Kelly, Susan E., 'Illness online: Self-reported data and questions of trust in medical and social research', Theory, Culture and Society 30 (4), forthcoming, In special issue, Digital Devices: The Social Life of Methods, edited by John Law, Evelyn Ruppert, and Mike Savage.
Harris, A., Kelly, S.E. and Wyatt, S., 'Counseling customers: Emerging roles for genetic counselors in the direct-to-consumer genetic testing market', Journal of Genetic Counseling, (early online view), 2013.
Harris, A., Wyatt, S. and Kelly, S.E., '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), 2013: 236 – 257.
Harris, A., 'Shopping for a soft sweater and a comfy pair of genes', Genomics, Society and Policy, 7, 2011: 57-64.
Kelly, Susan, E, Harris, Anna, and Wyatt, Sally. The medium and the message: Genetic counselling in the direct-to-consumer genetic testing industry. European Journal of Human Genetics 19, Supplement 2, 2011.
Harris, Anna, Wyatt, Sally, and Kelly, Susan E. (2011) Health-e skepticism: Trust in the age of the internet. Available at SSRN: http://ssrn.com/abstract=1921424 or http://dx.doi.org/10.2139/ssrn.1921424