CyberGenetics: Health genetics and new media

Description

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. Cover Half Title Title Page Copyright Page Dedication Table of Contents Acknowledgements List of abbreviations and acronyms 1 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 References 2 Users Patients-in-waiting Celebrity users Non-celebrity users Potential users and non-users Conclusion References 3 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 4 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 5 Controversy Schizophrenia genetics Controversy goes online Selling genetic tests online for schizophrenia Controversy in action: citation and production of knowledge Conclusion References 6 Conclusion: CyberGenetic futures Preventive measures 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-consumeror which diseases they test for Reference Index