Katie Featherstone - Creating Conditions: The Making and Remaking of a Genetic Syndrome

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Creating Conditions

Based on original ethnographic research, this monograph examines the impact of new genetic knowledge on the classification of one syndrome to illuminate more general issues concerning the construction and interpretation of diseases and syndromes. It follows the work of clinicians, scientists, activists, parents and others to understand the trajectory of a genetic condition. This is an especially timely exercise. As one among a vast number of conditions that have been associated with genetic causes, Rett syndrome illustrates some of the most significant developments in contemporary medicine. While the impacts of genetics on contemporary medicine are many and diverse, the identification of conditions as genetic is a significant feature of current medical thought and perception. This monograph provides a key exemplar of the implications of genetic medicine that are far-reaching and extend well beyond this particular syndrome.

This multi-sited ethnography follows the phenomenon across various key encounters and institutional contexts to illustrate the multiple circuits and sites where relationships between research, diagnosis, treatment and social mobilization take place. These are by no means linear processes. The laboratory and the clinic, the family and the support-group are all subject to mutual influence and this monograph documents the multiple sites and versions in which this medical condition is enacted and represented.

Katie Featherstone is Senior Lecturer within the Cardiff School of Nursing and Midwifery and a Research Fellow at Cesagen, Cardiff University. A sociologist of medicine, her recent ethnographic work includes an examination of the social consequences and clinical utilization of new genetic technologies, specifically within dysmorphology, a specialism of clinical genetics, and an examination of kinship and disclosure in the context of genetic information (The Wellcome Trust).

Paul Atkinson is Distinguished Research Professor of Sociology at Cardiff University. He is an Academician of the Academy of Social Sciences. Recent publications include Everyday Arias: An Operatic Ethnography and Contours of Culture, with Sara Delamont and William Housley. Together with Sara Delamont he edits the journal Qualitative Research. He is currently conducting ethnographic work in art-makers studios.

Genetics and Society

Series Editors: Ruth Chadwick, Director of Cesagen, CardiffUniversity; John Dupr, Director of Egenis, Exeter University; David Wield, Director of Innogen, Edinburgh University; and Steve Yearley, 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 the Cesagen, one of the centres forming the ESRCs 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, textbooks 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 HorlickJones, John Walls, Gene Rowe, Nick Pidgeon, Wouter Poortinga, Graham Murdock and Tim ORiordan

Growth Cultures

Life sciences and economic development

Philip Cooke

Human Cloning in the Media

Joan Haran, Jenny Kitzinger, Maureen McNeil and Kate ORiordan

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 todays 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 syndrome

Katie Featherstone and Paul Atkinson

Forthcoming titles include:

Genetic Testing

Accounts of autonomy, responsiblility and blame

Michael Arribas-Allyon, Srikant Sarangi and Angus Clarke

Scientific, Clinical and Commercial Development of the Stem Cell

From radiobiology to regenerative medicine

Alison Kraft

Barcoding Nature

Claire Waterton, Rebecca Ellis and Brian Wynne

Gender and Genetics

Towards a sociological account of prenatal screening

Kate Reed

Regenerating Bodies

Tissue and cell theraphy in the twenty-first century

Julie Kent

Creating Conditions

The making and remaking of a genetic syndrome

Katie Featherstone and Paul Atkinson

First published 2012

by Routledge

2 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN

Simultaneously published in the USA and Canada

by Routledge

711 Third Avenue, New York, NY 10017

Routledge is an imprint of the Taylor & Francis Group, an informa business

2012 Katie Featherstone and Paul Atkinson

The right of Katie Featherstone and Paul Atkinson to be identified as authors of this work has been asserted by them in accordance with the Copyright, Designs and Patent 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

Featherstone, Katie.

Creating conditions : the making and re-making of a genetic syndrome / by Katie Featherstone, Paul Atkinson.

p. cm. (Genetics and society)

Includes bibliographical references and index.

1. Rett syndrome. 2. Genetic disorders. I. Atkinson, Paul, 1947- II. Title.

RJ506.R47F43 2011

616.85884dc22

2011004674

ISBN13: 978-0-415-49665-0 hbk

ISBN13: 978-0-203-87815-6 ebk

Contents

Acknowledgments

This book and the research on which it is based would not have been possible without the financial and intellectual support of a wide number of people. Our research was made possible by a research grant from The Health Foundation, whose financial support is gratefully acknowledged. The research was undertaken and the book prepared under the auspices of Cesagen, and thus the support of the Economic and Social Research Council (ESRC) is gratefully acknowledged. The work was part of the Programme of the ESRC Research Centre for Economic and Social Aspects of Genomics.

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