Health genetics and new media
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Online genetic testing services are increasingly being offered to consumers who are becoming exposed to, and knowledgeable about, new kinds of genetic technologies, as the launch of a 23andme genetic testing product in the UK testifies. Genetic research breakthroughs, cheek swabbing forensic pathologists and celebrities discovering their ancestral roots are littered throughout the North American, European and Australasian media landscapes. Genetic testing is now capturing the attention, and imagination, of hundreds of thousands of people who can not only buy genetic tests online, but can also go online to find relatives, share their results with strangers, sign up for personal DNA-based musical scores, and take part in research. This book critically examines this market of direct-to-consumer (DTC) genetic testing from a social science perspective, asking, what happens when genetics goes online?
With a focus on genetic testing for disease, the book is about the new social arrangements which emerge when a traditionally clinical practice (genetic testing) is taken into new spaces (the internet). It examines the intersections of new genetics and new media by drawing from three different fields: internet studies; the sociology of health; and science and technology studies.
While there has been a surge of research activity concerning DTC genetic testing, particularly in sociology, ethics and law, this is the first scholarly monograph on the topic, and the first book which brings together the social study of genetics and the social study of digital technologies. This book thus not only offers a new overview of this field, but also offers a unique contribution by attending to the digital, and by drawing upon empirical examples from our own research of DTC genetic testing websites (using online methods) and in-depth interviews in the United Kingdom with people using healthcare services.
Table of Contents
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
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.
This book is a powerful antidote to simplistic portrayals of online genetics as either empowering or harming test-takers. Using novel and innovative methodologies to explore how users and health professionals make sense of online genetics, it provides fascinating and also troubling insights into the meaning of online genetics at the personal, social, and political level. - Barbara Prainsack, Professor of Sociology, Department of Social Science, Health & Medicine, King’s College London
The merger of information technology and genetics into ‘cybergenetics’ is an important development in health science. This book offers crucial critical insights into revamped versions of genetic determinism, the role of online platform and companies in medical research, and questions of trust with regards to the digital technologies that increasingly organize our health care. Harris,Wyatt and Kelly provide a much needed guide to the cybergenetics future. - José van Dijck, Professor of Media Studies at the University of Amsterdam
In Cybergenetics, Anna Harris, Susan Kelly and Sally Wyatt have successfully combined close reading of an impressive body of work from science and technology studies, internet studies, and the sociology of health and illness, with a deep knowledge of trends and developments in direct-to-consumer genetic testing. They offer us a critical and rigorous account of how genetic and digital worlds are remaking each other and, along the way, experiment with writing in alternative voices, from autobiologies, future scenarios, to poetry. The result is an enjoyable, thoughtful, and imaginative book, which offers an indispensable guide to non-experts, students, and researchers wishing to make sense of what happens when genetics goes online. - Dr Richard Tutton, Senior Lecturer, Lancaster University
Genetics has long remained an obscure field, carefully hidden from public consciousness. Now, in contrast, it is has become both mainstream and big business. Typically, genetic results for humans are highly personal and intensively political at the same time. Through its mixed and playful methodology and its broad theoretical framing, CyberGenetics demonstrates how the public view of genetic testing and personal genomics - as seen through social media and the Internet - revolves around several explosive axes: privacy vs. exposure, fear vs. hope, participation vs. exploitation. This book has much to offer for those interested in the exploration of identity, self and belonging through the examination of genetic avenues and informed debates about science and politics. - Gísli Pálsson, Professor Semi-Emeritus, Department of Anthropology, University of Iceland
The authors break new ground with a creative combination of internet studies, science and technology studies and sociology of health and illness, used to examine the emerging domain of online genetic testing. The result is a methodologically innovative and insightful study that brings to life the complex inter-connecting worlds of testers and tested. Dr Christine Hine, Reader in Sociology, University of Surrey