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E-raamat: CyberGenetics: Health genetics and new media [Taylor & Francis e-raamat]

  • Formaat: 176 pages, 1 Halftones, black and white; 1 Illustrations, black and white
  • Sari: Genetics and Society
  • Ilmumisaeg: 14-Aug-2018
  • Kirjastus: Routledge
  • ISBN-13: 9781315670799
  • Taylor & Francis e-raamat
  • Hind: 166,18 €*
  • * hind, mis tagab piiramatu üheaegsete kasutajate arvuga ligipääsu piiramatuks ajaks
  • Tavahind: 237,40 €
  • Säästad 30%
  • Formaat: 176 pages, 1 Halftones, black and white; 1 Illustrations, black and white
  • Sari: Genetics and Society
  • Ilmumisaeg: 14-Aug-2018
  • Kirjastus: Routledge
  • ISBN-13: 9781315670799

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.

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)
23andMe'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(3)
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.