De-Sequencing: Identity Work with Genes PDF
Preview De-Sequencing: Identity Work with Genes
HEALTH, TECHNOLOGY AND SOCIETY De-Sequencing Identity Work with Genes Edited by Dana Mahr Martina von Arx Health, Technology and Society Series Editors Andrew Webster Department of Sociology University of York York, UK Sally Wyatt Faculty of Arts and Social Sciences Maastricht University Maastricht, The Netherlands Rebecca Lynch Life Sciences and Medicine King’s College London London, UK Martyn Pickersgill Usher Institute University of Edinburgh Edinburgh, UK Medicine, health care, and the wider social meaning and management of health are undergoing major changes. In part this reflects develop- ments in science and technology, which enable new forms of diagnosis, treatmentanddeliveryofhealthcare.Italsoreflectschangesinthelocus of care and the social management of health. Locating technical devel- opments in wider socio-economic and political processes, each book in the series discusses and critiques recent developments in health tech- nologies in specific areas, drawing on a range of analyses provided by the social sciences. Some have a more theoretical focus, some a more applied focus but all draw on recent research by the authors. The series also looks toward the medium term in anticipating the likely configura- tions of health in advanced industrial society and does so comparatively, through exploring the globalization and internationalization of health. More information about this series at http://www.palgrave.com/gp/series/14875 · Dana Mahr Martina von Arx Editors De-Sequencing Identity Work with Genes Editors Dana Mahr Martina von Arx Section de Biologie Section de Biologie University of Geneva University of Geneva Geneva, Switzerland Geneva, Switzerland Health,Technology and Society ISBN 978-981-15-7727-7 ISBN 978-981-15-7728-4 (eBook) https://doi.org/10.1007/978-981-15-7728-4 ©The Editor(s) (if applicable) andThe Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2020 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whetherthewholeorpartofthematerialisconcerned,specificallytherightsoftranslation,reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way,andtransmissionorinformationstorageandretrieval,electronicadaptation,computersoftware, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publicationdoesnot imply,evenintheabsenceof aspecific statement,thatsuch namesareexempt from the relevant protective laws and regulations and therefore free for general use. Thepublisher,theauthorsandtheeditorsaresafetoassumethattheadviceandinformationinthis book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made.The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Cover image: © Eky Akmal/EyeEm This Palgrave Macmillan imprint is published by the registered company Springer Nature Singapore Pte Ltd. The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore Series Editors’ Preface Medicine, health care, and the wider social meanings and management of health are continually in the process of change. While the ‘birth of the clinic’ heralded the process through which health and illness became increasinglysubjecttothesurveillanceofmedicine,forexample,surveil- lance has become more complex, sophisticated, and targeted—as seen in the search for ‘precision medicine’ and now ‘precision public health’. Both surveillance and health itself emerge as more provisional, uncer- tain, and risk-laden as a consequence, and we might also ask what now constitutes ‘the clinic’, how meaningful a concept of a clinic ultimately is, and where else might we now find (or not find) healthcare spaces and interventions. Ongoing developments in science and technology are helping to enable and propel new forms of diagnosis, treatment, and the delivery of health care. In many contexts, these innovations both reflect and further contribute to changes in the locus of care and burden of respon- sibilityforhealth.Genetics,informatics,imaging—tonamebutafew— are redefining collective and individual understandings of the body, v vi Series Editors’ Preface health, and disease. At the same time, long established and even osten- sibly mundane technologies and techniques can generate ripples in local discourse and practices as ideas about the nature and focus of healthcare shift in response to global debates about, for instance, One Health and Planetary Health. Theverytechnologiesthat(re)definehealtharealsothemeansthrough which the individualisation of health care can occur—through, for instance, digital health, diagnostic tests, and the commodification of restorative tissue. This individualisation of health is both culturally- derived and state-sponsored, as exemplified by the promotion of ‘self- care’.Theseshiftsaresimultaneouslywelcomedandcontestedbyprofes- sionals, patients, and wider publics. Hence they at once signal and instantiate wider societal ambivalences and divisions This Series explores these processes within and beyond the conven- tional domain of ‘the clinic’, and asks whether they amount to a qual- itative shift in the social ordering and value of medicine and health. Locating technical use and developments in wider socio-economic and political processes, each book discusses and critiques the dynamics between health, technology, and society through a variety of specific cases,anddrawingonarangeofanalysesprovidedbythesocialsciences. The Series has already published more than twenty books that have explored many of these issues, drawing on novel, critical, and deeply informed research undertaken by their authors. In doing so, the books have shown how the boundaries between the three core dimensions that underpin the whole Series—health, technology, and society—are changing in fundamental ways. In ‘De-Sequencing’, the editors and contributors focus on an area that has galvanised so much of the scholarship that the HTS series draws from and extends: genetics. This interdisciplinary collection— which draws together researchers from the social sciences and human- ities across a range of countries—considers the movement of genetic information between a number of sites, both material and discursive. In doing so, it illustrates the complexities of, and transformations that can happenthrough,diverseformsofmedi(atis)ation,andthewaysinwhich Series Editors’ Preface vii personal identities shape and are shaped by responses to genetic infor- mation. Accordingly, ‘De-Sequencing’ challenges any claim that persons ‘are’theirgeneticsequences,andvividlydemonstratesthetrafficbetween health, technologies, and societies. London, UK Rebecca Lynch Edinburgh, UK Martyn Pickersgill Contents 1 Introduction 1 Dana Mahr, Christoph Rehmann-Sutter, and Martina von Arx Part I Science and Medicine 2 Personalised Medicine: Problems of Translation into the Human Domain 19 HenrikVogt and Sara Green 3 Contemporary Future Parents: From Tentative Pregnancy and Moral Pioneers to Educated Moral Gamblers 49 Yael Hashiloni-Dolev ix x Contents Part II Philosophy of Biology 4 Developmental Narratives: How We Think that Organisms Use Genetic and Epigenetic Information 57 Christoph Rehmann-Sutter 5 Epigenetics, Responsiveness and Embodiment 81 Maria Kronfeldner 6 Space andTime of Developmental Narratives 89 Claudine Burton-Jeangros Part III Societal Contexts 7 Data Mining in Systems Medicine and the Project of Solidarity:The Interface of Genomics and Society Revisited 97 Barbara Prainsack 8 Experimenting with Solidarity in Biomedicine: From Practice to Principle? 119 Luca Chiapperino and Francesco Panese 9 The Moral Making of Data-Rich Personalised Medicine 133 Gaia Barazzetti Part IV Families 10 An Ordering of Letters: My Own Personal Genome 145 Kate O’Riordan
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