CyberGenetics Health genetics and new media 1st Edition by Anna Harris, Susan Kelly, Sally Wyatt 1138946516 9781138946514

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ISBN 10: 1138946516 

ISBN 13: 9781138946514

Author: Anna Harris, Susan Kelly, Sally Wyatt

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:

Introduction: CyberGenetics

Figure 1.1: Direct-to-consumer genetic testing

Box 1.1: Autobiology of a direct-to-consumer genetic testing user

Brief history of direct-to-consumer genetic testing

Brief history of the internet and health online

Intersecting determinisms: when genetic testing goes online

New spaces for health-e relations?

Changing relations of trust: in bodies, expertise, science and technology

Overview of book

Apple falls from the tree by Caoilinn Hughes

References

Users

Patients-in-waiting

Celebrity users

Non-celebrity users

Potential users and non-users

Conclusion

References

Professionals

Genetic counselling online: co-production of users and technologies

Representations of genetic counselling by direct-to-consumer genetic testing companies

Models of genetic counselling provision

Genetic counselling roles

New roles for genetic counsellors

Conclusion

References

Participation

The participatory turn?

Novel methods: the ‘research-y’ part of 23andMe

23andMe’s ‘participatory culture’

Sharing gifts under the genetic family tree

Reciprocal ties

Spitting for free

Conclusion

References

Controversy

Schizophrenia genetics

Controversy goes online

Selling genetic tests online for schizophrenia

Controversy in action: citation and production of knowledge

Conclusion

References

Conclusion: CyberGenetic futures

Preventive measures by Caoilinn Hughes

Letters from the lake

GenULuv announces entry to stock market

Online genetic testing: an archaeological assessment

References

Appendix A: New media, new genetics, new methods

Box A.1: Seven principles for doing research about emergent techno-scientific phenomena

Methodological choices made in preparation of this book

Finding material online: ethics of using self-reported data

Ontological issues of finding participants and defining ‘users’

The internet is not the world: epistemological considerations of online research

Future directions

References

Appendix B: Direct-to-consumer genetic testing websites

Direct-to-consumer psychiatric-only genetic testing sites

General direct-to-consumer genetic testing sites with tests related to psychiatric conditions

Direct-to-consumer genetic testing sites not offering tests for psychiatric conditions

Genetic testing websites where it is not clear if it is direct-to-consumer or which diseases they test for

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Tags: Anna Harris, Susan Kelly, Sally Wyatt, CyberGenetics