Table Of ContentThe 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 platforms and
companies in medical research, and questions of trust with regards to the digital
technologies that increasingly organize our healthcare. Harris, Kelly and Wyatt
provide a much needed guide to the cybergenetics future.
José van Dijck, Professor of Media Studies, University of Amsterdam
Genetics has long remained an obscure field, carefully hidden from public
consciousness. Now, in contrast, it is has become both mainstream and big busi-
ness. 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 inter-
ested 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
This book is a powerful antidote to simplistic portrayals of online genetics as
either empowering or harming test-takers. Using novel and innovative method-
ologies 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 levels.
Barbara Prainsack, Professor of Sociology,
Department of Social Science, Health & Medicine, King’s College London
In CyberGenetics, Anna Harris, Susan Kelly and Sally Wyatt have successfully
combined close reading of an impressive body of work from science and tech-
nology studies, internet studies, and the sociology of health and illness, with a
deep knowledge of trends and developments in direct-to-consumer genetic test-
ing. 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.
Richard Tutton, Senior Lecturer,
Department of Sociology, Lancaster University
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CyberGenetics
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 United Kingdom 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 criti-
cally 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 UK with people using
healthcare services.
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 has her own blog.
Susan Kellyis Associate Professor of medical sociology at the University of Exeter, and
Senior Research Fellow in Egenis (Exeter Centre for the Study of the Life Sciences).
She earned a PhD in sociology at 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 at the Royal
Netherlands Academy of Arts and Sciences, and Professor of digital cultures in devel-
opment at Maastricht University. She is the founding co-editor (with Andrew
Webster) of the Health, Technology and Society series published by Palgrave
Macmillan.
Genetics and Society
Series editors: Ruth Chadwick, former Director of Cesagene, Cardiff University;
John Dupré, Director of Egenis, University of Exeter and University of
Edinburgh; David Wield, Director of Innogen, Edinburgh University; and Steve
Yearley, former Director of the Genomics Forum, Edinburgh University.
The books in this series, all based on original research, explore the social,
economic and ethical consequences of the new genetic sciences. The series is
based in Cesagene, one of the centres forming the ESRC’s Genomics Network
(EGN), the largest UK investment in social science research on the implications
of these innovations. With a mix of research monographs, edited collections, text-
books and a major new handbook, the series is a valuable contribution to the
social analysis of developing and emergent biotechnologies.
Series titles include:
New Genetics, New Social Formations
Peter Glasner, Paul Atkinson and Helen Greenslade
New Genetics, New Identities
Paul Atkinson, Peter Glasner and Helen Greenslade
The GM Debate
Risk, politics and public engagement
Tom Horlick-Jones, John Walls, Gene Rowe, Nick Pidgeon, Wouter Poortinga,
Graham Murdock and Tim O’Riordan
Growth Cultures
Life sciences and economic development
Philip Cooke
Human Cloning in the Media
Joan Haran, Jenny Kitzinger, Maureen McNeil and Kate O’Riordan
Local Cells, Global Science
Embryonic stem cell research in India
Aditya Bharadwaj and Peter Glasner
Handbook of Genetics and Society
Paul Atkinson, Peter Glasner and Margaret Lock
The Human Genome
Chamundeeswari Kuppuswamy
Community Genetics and Genetic Alliances
Eugenics, carrier testing and networks of risk
Aviad E. Raz
Neurogenetic Diagnoses
The power of hope and the limits of today’s medicine
Carole Browner and H. Mabel Preloran
Debating Human Genetics
Contemporary issues in public policy and ethics
Alexandra Plows
Genetically Modified Crops on Trial
Opening up alternative futures of Euro-agriculture
Les Levidow
Creating Conditions
The making and remaking of a genetic condition
Katie Featherstone and Paul Atkinson
Genetic Testing
Accounts of autonomy, responsibility and blame
Michael Arribas-Allyon, Srikant Sarangi and Angus Clarke
Regulating Next Generation Agri-Food Biotechnologies
Lessons from European, North American and Asian Experiences
Edited by Michael Howlett and David Laycock
Regenerating Bodies
Tissue and cell therapies in the twenty-first century
Julie Kent
Gender and Genetics
Sociology of the prenatal
Kate Reed
Risky Genes
Genetics, breast cancer and Jewish identity
Jessica Mozersky
The Gene, the Clinic, and the Family
Diagnosing dysmorphology, reviving medical dominance
Joanna Latimer
Barcoding Nature
Shifting cultures of taxonomy in an age of biodiversity loss
Claire Waterton, Rebecca Ellis and Brian Wynne
Negotiating Bioethics
The governance of UNESCO’s bioethics programme
Adèle Langlois
Breast Cancer Gene Research and Medical Practices
Transnational perspectives in the time of BRCA
Edited by Sahra Gibbon, Galen Joseph, Jessica Mozersky, Andrea zur Nieden
and Sonja Palfner
Science and Democracy
Making knowledge and making power in the biosciences and beyond
Edited by Stephen Hilgartner, Clark A. Miller and Rob Hagendijk
Knowing New Biotechnologies
Social aspects of technological convergence
Edited by Matthias Wienroth and Eugenia Rodrigues
CyberGenetics
Health genetics and new media
Anna Harris, Susan Kelly and Sally Wyatt
Forthcoming titles include:
Controlling Pharmaceutical Risks
Science, cancer, and the geneticization of drug testing
Edited by John Abraham and Rachel Ballinger
Scientific, Clinical and Commercial Development of the Stem Cell
From radiobiology to regenerative medicine
Alison Kraft
CyberGenetics
Health genetics and new media
Anna Harris, Susan Kelly and Sally Wyatt
First published 2016
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
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711 Third Avenue, New York, NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2016 Anna Harris, Susan Kelly and Sally Wyatt
The right of Anna Harris, Susan Kelly and Sally Wyatt to be identified as
authors of this work has been asserted by them in accordance with sections 77
and 78 of the Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or
utilised in any form or by any electronic, mechanical, or other means, now
known or hereafter invented, including photocopying and recording, or in any
information storage or retrieval system, without permission in writing from
the publishers.
Trademark notice: Product or corporate names may be trademarks or
registered trademarks, and are used only for identification and explanation
without intent to infringe.
British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
Names: Harris, Anna (Medical anthropologist) | Kelly, Susan (Susan Elizabeth)
| Wyatt, Sally, 1959–
Title: Cybergenetics : health genetics and new media / by Anna Harris, Susan
Kelly, Sally Wyatt.
Other titles: Cyber genetics
Description: Abingdon, Oxon ; New York, NY : Routledge, 2016.
Identifiers: LCCN 2015040927| ISBN 9781138946514 (hardback) | ISBN
9781315670799 (ebook)
Subjects: LCSH: Human chromosome abnormalities—Diagnosis—Computer
network resources. | Genetic screening—Computer network resources. | Genetic
screening—Social aspects. | Internet.
Classification: LCC RB155.65 .K45 2016 | DDC 362.196/04207—dc23
LC record available at http://lccn.loc.gov/2015040927
ISBN: 978-1-138-94651-4 (hbk)
ISBN: 978-1-315-67079-9 (ebk)
Typeset in Times New Roman
by FiSH Books Ltd, Enfield
For Thomas, Stephen and Hans
