Table Of ContentHEALTH, 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
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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
