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CyberGenetics: Health genetics and new media [Kõva köide]

  • Formaat: Hardback, 158 pages, kõrgus x laius: 234x156 mm, kaal: 385 g, 1 Halftones, black and white; 1 Illustrations, black and white
  • Sari: Genetics and Society
  • Ilmumisaeg: 29-Apr-2016
  • Kirjastus: Routledge
  • ISBN-10: 1138946516
  • ISBN-13: 9781138946514
  • Formaat: Hardback, 158 pages, kõrgus x laius: 234x156 mm, kaal: 385 g, 1 Halftones, black and white; 1 Illustrations, black and white
  • Sari: Genetics and Society
  • Ilmumisaeg: 29-Apr-2016
  • Kirjastus: Routledge
  • ISBN-10: 1138946516
  • ISBN-13: 9781138946514

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 recent 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 growing 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 recently 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 emerging 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.

Arvustused

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, Kings 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

Acknowledgements xiv
List of abbreviations and acronyms
xvii
1 Introduction: CyberGenetics
1(33)
Figure 1.1 Direct-to-consumer genetic testing
1(2)
Box 1.1 Autobiology of a direct-to-consumer genetic testing user
3(2)
Brief history of direct-to-consumer genetic testing
5(5)
Brief history of the internet and health online
10(4)
Intersecting determinisms: when genetic testing goes online
14(4)
New spaces for health-e relations?
18(3)
Changing relations of trust: in bodies, expertise, science and technology
21(4)
Overview of book
25(2)
Apple falls from the tree by Caoilinn Hughes
27(1)
References
28(6)
2 Users
34(22)
Patients-in-waiting
37(1)
Celebrity users
38(3)
Non-celebrity users
41(8)
Potential users and non-users
49(1)
Conclusion
50(2)
References
52(4)
3 Professionals
56(21)
Genetic counselling online: co-production of users and technologies
59(3)
Representations of genetic counselling by direct-to-consumer genetic testing companies
62(1)
Models of genetic counselling provision
63(1)
Genetic counselling roles
64(2)
New roles for genetic counsellors
66(4)
Conclusion
70(2)
References
72(5)
4 Participation
77(22)
The participatory turn?
78(2)
Novel methods: the `research-y' part of 23andMe
80(2)
23 and Me's `participatory culture'
82(1)
Sharing gifts under the genetic family tree
83(3)
Reciprocal ties
86(2)
Spitting for free
88(3)
Conclusion
91(3)
References
94(5)
5 Controversy
99(18)
Schizophrenia genetics
100(1)
Controversy goes online
101(2)
Selling genetic tests online for schizophrenia
103(6)
Controversy in action: citation and production of knowledge
109(2)
Conclusion
111(2)
References
113(4)
6 Conclusion: CyberGenetic futures
117(13)
Preventive measures by Caoilinn Hughes
117(2)
Letters from the lake
119(3)
GenULuv announces entry to stock market
122(2)
Online genetic testing: an archaeological assessment
124(5)
References
129(1)
Appendix A New media, new genetics, new methods
130(21)
Box A.1 Seven principles for doing research about emergent techno-scientific phenomena
131(1)
Methodological choices made in preparation of this book
132(5)
Finding material online: ethics of using self-reported data
137(3)
Ontological issues of finding participants and defining `users'
140(3)
The internet is not the world: epistemological considerations of online research
143(2)
Future directions
145(2)
References
147(4)
Appendix B Direct-to-consumer genetic testing websites
151(2)
Direct-to-consumer psychiatric-only genetic testing sites
151(1)
General direct-to-consumer genetic testing sites with tests related to psychiatric conditions
151(1)
Direct-to-consumer genetic testing sites not offering tests for psychiatric conditions
152(1)
Genetic testing websites where it is not clear if it is direct-to-consumer or which diseases they test for
152(1)
Reference 153(1)
Index 154
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.