Cybergenetics

This critical social science monograph examines direct-to-consumer genetic testing. Focusing on disease testing, it asks, what new social arrangements emerge when a traditionally clinical practice (genetic testing) is taken into new spaces (the internet).

Anna Harris completed a medical degree at the University of Tasmania, and a Masters and PhD in Medical Anthropology at the University of Melbourne. She has been a post-doctoral researcher at the Universities of Maastricht and Exeter. She has published in clinical and social science journals, and her own blog. Susan Kelly is Associate Professor in Sociology, University of Exeter and Senior Research Fellow in Egenis (Exeter Centre for the Study of the Life Sciences). She earned a PhD in Sociology from the University of California, San Francisco, followed by a post-doctoral position in the Stanford Center for Biomedical Ethics. Sally Wyatt is Programme Leader of the e-Humanities Group of the Royal Netherlands Academy of Arts and Sciences, and Professor of Digital Cultures in Development at Maastricht University. She is the founding co-editor (with Andrew Webster) of the Health, Technology & Society series published by Palgrave Macmillan.

1. Introduction: CyberGenetics 1.1. Brief history of direct-to-consumer genetic testing 1.2. Brief history of the internet and health online 1.3. Intersecting determinisms: When genetic testing goes online 1.4. New spaces for health-e relations? 1.5. Changing relations of trust, in bodies, expertise, science, technology 1.6. Overview of book 1.7. Apple falls from the tree 2. Users 2.1. Patients-in-waiting 2.2. Celebrity users 2.3. Non-celebrity users 2.4. Potential users and non-users 2.5. Conclusion 3. Professionals 3.1. Genetic counselling online: Co-production of users and technologies 3.2. Representations of genetic counselling by DTC genetic testing companies 3.3. Models of genetic counselling provision 3.4. Genetic counselling roles 3.5. New roles for genetic counselors 3.6. Conclusion 4. Participation 4.1. The participatory turn? 4.2. Novel methods: The 'research-y' part of 23andMe 4.3. 23andMe's 'participatory culture' 4.4. Sharing gifts under the genetic family tree 4.5. Reciprocal ties 4.6. Spitting for free 4.7. Conclusion 5. Controversy 5.1. Schizophrenia genetics 5.2. Controversy goes online 5.3. Selling genetic tests online for schizophrenia 5.4. Controversy in action: Citation and production of knowledge 5.5. Conclusion 6. Conclusion: CyberGenetic futures 6.1. Preventive Measures 6.2. Letters from the lake 6.3. GenULuv announces entry to stock market 6.4. Online Genetic Testing: An archaeological assessment Appendix A: New media, new genetics, new methods A.1. Methodological choices made in preparation of this book A.2. Finding material online: Ethics of using self-reported data A.3. Ontological issues of finding participants and defining 'users' A.4. The internet is not the world: Epistemological considerations of online research A.5. Future directions Appendix B: List of DTC genetic testing websites