Table Of Content

Genetics as social Practice theory, technology and society series editor: ross abbinnett, University of Birmingham, UK Theory, Technology and Society presents the latest work in social, cultural and political theory, which considers the impact of new technologies on social, economic and political relationships. central to the series are the elucidation of new theories of the humanity-technology relationship, the ethical implications of techno-scientific innovation, and the identification of unforeseen effects which are emerging from the techno-scientific organization of society. With particular interest in questions of gender relations, the body, virtuality, penality, work, aesthetics, urban space, surveillance, governance and the environment, the series encourages work that seeks to determine the nature of the social consequences that have followed the deployment of new technologies, investigate the increasingly complex relationship between ‘the human’ and ‘the technological’, or addresses the ethical and political questions arising from the constant transformation and manipulation of humanity. Other titles in this series the Visualised Foetus a cultural and Political analysis of Ultrasound imagery Julie Roberts isBn 978 1 4094 2939 5 neoliberalism and technoscience critical assessments Edited by Luigi Pellizzoni and Marja Ylönen isBn 978 1 4094 3532 7 Bio-objects life in the 21st century Edited by Niki Vermeulen, Sakari Tamminen and Andrew Webster isBn 978 1 4094 1178 9 Decentering Biotechnology assemblages Built and assemblages Masked Michael S. Carolan isBn 978 1 4094 1005 8 Genetics as social Practice transdisciplinary Views on science and culture edited by BarBara PrainsacK King’s College London, UK silKe schicKtanz University Medical Center Göttingen, Germany GaBriele Werner-FelMayer Medical University of Innsbruck, Austria © Barbara Prainsack, Silke Schicktanz, Gabriele Werner-Felmayer and contributors 2014 all rights reserved. no part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without the prior permission of the publisher. Barbara Prainsack, Silke Schicktanz and Gabriele Werner-Felmayer have asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as the editors of this work. Published by ashgate Publishing limited ashgate Publishing company Wey court east 110 cherry street Union road suite 3-1 Farnham Burlington, Vt 05401-3818 surrey, GU9 7Pt Usa england www.ashgate.com British Library Cataloguing in Publication Data a catalogue record for this book is available from the British library The Library of Congress has cataloged the printed edition as follows: Prainsack, Barbara. Genetics as social Practice: transdisciplinary Views on science and culture / by Barbara Prainsack, Silke Schicktanz, Gabriele Werner-Felmayer. pages cm.—(theory, technology and society) includes bibliographical references and index. isBn 978-1-4094-5548-6 (hardback: alk. paper)—isBn 978-1-4094-5549-3 (ebook)— isBn 978-1-4724-0718-4 (epub) 1. Genetics—social aspects. 2. Genomics—social aspects. 3. sociobiology. 4. science and civilization. I. Title. Qh438.7.P73 2014 304.5—dc23 2013033634 isBn 9781409455486 (hbk) isBn 9781409455493 (ebk – PDF) isBn 9781472407184 (ebk – ePUB) V Contents List of Tables and Figures vii Notes on Contributors ix Foreword xiii Johannes Zschocke Acknowledgements xvi 1 Geneticising Life: A Collective Endeavour and its Challenges 1 Barbara Prainsack, Silke Schicktanz and Gabriele Werner-Felmayer Part I CreatIng IdentItIes 2 Will Personal Genomic Information Transform One’s Self? 29 Jennifer R. Fishman and Michelle L. McGowan 3 The Changing Self: Philosophical Concepts of Self and Personal Identity in a Post-clinical Age of Genetics 43 Josef Quitterer 4 Ancestry Testing and DNA: Uses, Limits – and Caveat Emptor 59 Troy Duster 5 Other Stories: Artistic Explorations of Genealogy and Identity 73 Priska Gisler, Mo Diener and Luzia Hürzeler Part II sharIng Knowledge 6 The Latent Figure Protocol – A Photo-essay 95 Paul Vanouse 7 Consequences of Sequences, Codes and Messages: Artistic and Scientific Readings of Chromosomes in an Era of Consumerism 107 Gabriele Werner-Felmayer 8 The Ethics of Patenting in Genetics: A Second Enclosure of the Commons? 129 Sigrid Sterckx and Julian Cockbain Part III PartICIPatIng In the soCIal laboratory 9 Understanding Participation: The ‘Citizen Science’ of Genetics 147 Barbara Prainsack vi Genetics as Social Practice 10 LabouringMe, LabouringUs 165 Gisli Palsson 11 Making Responsible Life Plans: Cultural Differences in Lay Attitudes toward Predictive Genetic Testing for Late-Onset Diseases 181 Aviad E. Raz, Nitzan Rimon-Zarfaty, Julia Inthorn and Silke Schicktanz 12 Genetic Responsibility Revisited: Moral and Cultural Implications of Genetic Prediction of Alzheimer’s Disease 199 Silke Schicktanz and Friederike Kogel Index 219 List of Tables and Figures Tables 7.1 Text messages for Con’Sequences 119 9.1 Criteria for the classification of ʻcitizen scienceʼ projects 152 11.1 Number of respondents per focus group, in Germany and Israel, who supported testing for CC and HD and sharing test results with family members 186 Figures 5.1 Mo Diener – Family portraits: Anna Luise Peter, my great grandmother. Born the 1st of June 1882 in Elsau, Zurich. (Market booth, St. Gall, Switzerland, approx. 1925.) Rosa Josephine Brunner, my grandmother. Born the 10th of August 1909 in Stein, Appenzell A.R.H. Switzerland. Doris Naef, my mother. Born the 25th of October 1930 in Dietikon, Zurich, Switzerland. Anna Luise Peter (2nd from left) with her second husband (left). (Names, place and date of the photograph unknown.) 88 5.2 Mo Diener – Daily routine, an artistic workout / installation view. Swiss Jura. 2010 89 5.3 Il Nonno by Luzia Hürzeler – video stills 90 7.1 Male human diploid chromosome set (karyotype) (courtesy of Dr. Christine Fauth, Division of Human Genetics, Medical University of Innsbruck, Austria) 107 7.2 Design for banding patterns for p-arms of chromosome 9 (a) and of the Y chromosome (b), and for a fragment of the wall hanging (c) 108 7.3 Federica Esposito during the performance of Con’Sequences 108 viii Genetics as Social Practice 7.4 Design of Con’Sequences based on a haploid karyotype including both sex chromosomes of G-banded human chromosome idiograms 116 7.5 Barcoded sentence 118 10.1 The Genetic Atlas (according to deCODEme) 169 Notes on Contributors Julian Cockbain is a European Patent Attorney and a former partner in the Oxford office of British patent and trade mark attorney firm Dehns. Julian has worked primarily in the patenting of chemical and biotechnological inventions. He frequently gives talks/seminars on intellectual property law, e.g., at the universities of Lancaster, Bath, Exeter, Oxford, Warwick, Birmingham, Bergen, Trondheim (NTNU), Stavanger and Oslo. He has published widely on the subject of patentability. Mo Diener has been a performative and media artist since 1989. She has taught at the University of Berne, Switzerland, and has had a number of exhibitions internationally (most recently in the group show ‘Die Schweiz ist keine Insel’ (‘Switzerland is not an island’), Shedhalle, Zürich, 2013. Her current project combines sociological methods with artistic strategies in an artistic language addressing concepts of identity. In her most recent show in Zürich, entitled: ‘sorry, aren’t we living in the 21st century?’, she showed an archive of eight encounters with members of the travelling Jenish community, a recognised minority since 1998. Troy Duster is Chancellor’s Professor and Senior Fellow at the Warren Institute for Law and Social Policy at the University of California, Berkeley. His major interests revolve around the social and political implications of developments in human molecular genetics, including forensic science, clinical medicine and recent emphases in pharmaceuticals targeting specific population groups. Jennifer R. Fishman is Assistant Professor of Biomedical Ethics and Social Studies of Medicine at McGill University in Montreal, Canada. Her research centers on the empirical investigation of the social and ethical implications of the development, diffusion, and commodification of new (largely biomedical) technologies. Her interests lie at the intersections of science and technology studies, empirical bioethics, and the sociology of health and illness. Priska Gisler is Head of the Research Unit Intermediality at the Berne University of the Arts, where she currently works to build up a research focus on artistic and performative practices. She has a background in Science and Technology Studies and has published in areas such as history and sociology of collecting and exhibiting, politics of (science-public) mediation, and sociology of the law. Recently she co-edited the volume Modell Mensch. Konturierungen des Menschlichen in den Wissenschaften (‘Model human: contours of the human in the sciences’, Zürich, Chronos, 2011), as well as “Intersections of Law and Culture” (New York: Palgrave MacMillan, 2013). She is in the process of editing a two- volume book about the artistic preparation of a rockslide (in collaboration with the Bündner Kunstmuseum Chur).