| This collaborative, interdisciplinary project will provide 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 will examine 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. The collaboration provides an innovative research approach to studying potential impacts of DTC genetic testing on consumers, knowledge production and healthcare systems, three areas in which potential impacts have been identified but for which little empirical base exists. This project critically examines the relationships between information, empowerment and geneticiziation with regard to genetics and mental illness, and seeks to assess the significant of DTC genetic testing in mediating this relationship. The research will be conducted by a post-graduate Research Fellow working in the first year with Professor Sally Wyatt (Digital Cultures in Development, Maastricht University & Senior Research Fellow, Virtual Knowledge Studio, Royal Netherlands Academy of Arts and Sciences) to engage in a comprehensive context- and media-specific analysis of DTC genetic test sites, with special attention to sites offering genetic tests relevant to risk, diagnosis or treatment of psychiatric disorders (such as Psynomics Inc.). This phase of the project will be informed by Professor Wyatt's expertise in the relationship between technological and social change particularly concerning social exclusion and inequality, and her more recent research on the ways in which people incorporate the internet into their health information-seeking practices. This phase of the research will provide an empirical basis for examining claims regarding empowerment, confidentiality and democratization of personal genetic health information. In the second year, the Research Fellow will work with Dr. Susan Kelly, Senior Research Fellow, Egenis, University of Exeter, to conduct service user led research with mental health user communities including affected individuals, family members, advocates, and health care professionals. This phase of the project will draw upon Kelly's extensive experience researching family and patient experiences of genetic conditions and genetic services, impacts of genetic knowledge, and perspectives on emerging technologies. Using focus groups and in-depth interviews, the research will examine awareness, perspectives, response to, concerns and interests in DTC genetic tests for psychiatric disorders, and impacts of genetic knowledge of pyschiatric disorders on these user communities. An important feature of the project is user involvement in development of specific subquestions addressed in the project. Evaluation of scientific claims in psychiatric genomics will be ongoing throughout the two years of the project, involving literature review, interviews with scientists and attendence at key scientific conferences. An Advisory Board comprising experts in psychiatriac genetics, nosology, and clinical practice; psychiatric illness in families; direct to consumer testing regulatory contexts; medical informatics and user perspectives will provide ongoing support to the project. The composition and involvement of the board reflects the objectives of the research to address user concerns and perspectives, and particularly impact on the lives of people with mental illness, the healthcare system, and its practitioners. In addition to planned publications, a final workshop is proposed for dissemination of research findings to user communities as well as policy makers. Joint supervision will be facilitated by team meetings at each site, as well as close communication via electronic media. |
