Genetics, Health, and Society

Visit the link below to download the full version of this book:

https://medipdf.com/product/genetics-health-and-society/

Click Download Now

GENETICS, HEALTH AND SOCIETY
ADVANCES IN MEDICAL SOCIOLOGY

Series Editor: Brea L. Perry

Series Editor for Volumes 5–6: Gary L. Albrecht
Series Editor for Volumes 7–8: Judith A. Levy
Series Editor for Volumes 9–15: Barbara Katz Rothman
Recent Volumes:
Volume 6: Case and Care Management – Edited by Gary L. Albrecht
Volume 7: Emergent Issues in the Field of Drug Abuse – Edited by
Judith A. Levy, Richard C. Stephens and Duane C. McBride
Volume 8: Social Networks and Health – Edited by Bernice A.
Pescosolido and Judith A. Levy
Volume 9: Bioethical Issues, Sociological Perspectives – Edited by
Barbara K. Rothman, Elizabeth M. Armstrong and Rebecca
Tiger
Volume 10: Patients, Consumers and Civil Society – Edited by Susan
M. Chambré and Melinda Goldner
Volume 11: Understanding Emerging Epidemics: Social and Political
Approaches – Edited by Ananya Mukherjea
Volume 12: Sociology of Diagnosis – Edited by P. J. McGann and
David J. Hutson
Volume 13: Sociological Reflections on the Neurosciences – Edited by
Martyn Pickersgill and Ira van Keulen
Volume 14: Critical Perspectives on Addiction – Edited by Julie
Netherland
Volume 15: Ecological Health: Society, Ecology and Health – Edited by
Maya K. Gislason
ADVANCES IN MEDICAL SOCIOLOGY VOLUME 16

GENETICS, HEALTH AND SOCIETY

EDITED BY
BREA L. PERRY
Department of Sociology, Indiana University, Bloomington, IN, USA

United Kingdom – North America – Japan

India – Malaysia – China
Emerald Group Publishing Limited
Howard House, Wagon Lane, Bingley BD16 1WA, UK

First edition 2015

Copyright © 2015 Emerald Group Publishing Limited

Reprints and permissions service

Contact: [email protected]

No part of this book may be reproduced, stored in a retrieval system, transmitted in any form or by
any means electronic, mechanical, photocopying, recording or otherwise without either the prior
written permission of the publisher or a licence permitting restricted copying issued in the UK by The
Copyright Licensing Agency and in the USA by The Copyright Clearance Center. Any opinions
expressed in the chapters are those of the authors. Whilst Emerald makes every effort to ensure the
quality and accuracy of its content, Emerald makes no representation implied or otherwise, as to the
chapters’ suitability and application and disclaims any warranties, express or implied, to their use.

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-1-78350-581-4
ISSN: 1057-6290 (Series)
CONTENTS

EDITORIAL ADVISORY BOARD

LIST OF CONTRIBUTORS

THE SOCIOLOGY OF, IN, AND WITH GENETICS: THE ROLE OF

MEDICAL SOCIOLOGY IN THE ERA OF “-OMICS”

PART I
CRITICAL PERSPECTIVES ON GENETICS AS USUAL

HERITABILITY STUDIES: METHODOLOGICAL FLAWS,

INVALIDATED DOGMAS, AND CHANGING PARADIGMS
Callie H. Burt

ALL MARKED-UP IN THE GENETIC ERA: RACE AND ETHNICITY

AS “FLOATING SIGNIFIERS” IN GENETIC AND GENOMIC
RESEARCH
Latrica Best and W. Carson Byrd

GENETIC APPROACHES TO HEALTH DISPARITIES

Catherine Bliss

PART II
TOWARD A SOCIOLOGY WITH GENETICS

MAKING A CASE FOR GENETICS: INTERDISCIPLINARY VISIONS

AND PRACTICES IN THE CONTEMPORARY SOCIAL SCIENCES
Sara Shostak and Jason Beckfield
RESEARCHING GENES, BEHAVIOR, AND SOCIETY TO IMPROVE
POPULATION HEALTH: A PRIMER IN COMPLEX ADAPTIVE
SYSTEMS AS AN INTEGRATIVE APPROACH
Patricia Goodson

SOCIOLOGY IN AN AGE OF GENOMIC INSTABILITY: COPY

NUMBER VARIATION, SOMATIC MOSAICISM, AND THE FALLEN
GENOME
Martine Lappé and Hannah Landecker

NATURAL SYMPTOMS? THE INTERSECTION OF SOCIAL,

BIOLOGICAL, AND GENETIC DETERMINANTS OF DEPRESSION IN
LATER LIFE
Jason Schnittker

PART III
GENETIC COMPLEXITY IN MEDICAL ETHICS AND PRACTICE

FRAMES OF REFERENCE: MARKETING THE PRACTICE AND

ETHICS OF PGD ON FERTILITY CLINIC WEBSITES
Debra Swoboda

THE RIGHT TO KNOW OR NOT TO KNOW: RISK NOTIFICATION

AND GENETIC COUNSELLING
Amaya Gilson, Susan R. Hemer, Anna Chur-Hansen and Shona
Crabb

USING PUBLIC-PRIVATE PARTNERSHIPS TO MITIGATE

DISPARITIES IN ACCESS TO GENETIC SERVICES: LESSONS FROM
WISCONSIN
Laura Senier, Matthew Kearney and Jason Orne
EDITORIAL ADVISORY BOARD

Carol Boyer
Department of Sociology, Rutgers University, USA

Robyn Brown
Department of Sociology, DePaul University, USA

Bridget J. Goosby
Department of Sociology, University of Nebraska-Lincoln, USA

Allan Horwitz
Department of Sociology, Rutgers University, USA

Sigrun Olafsdottir
Department of Sociology, Boston University, USA

David Pilgrim
Department of Sociology, Social Policy, and Criminology, University of
Liverpool, UK

Erin Pullen
Department of Behavioral Science, University of Kentucky, USA

Corinne Reczek
Department of Sociology, Ohio State University, USA

Anne Rogers
Wessex Faculty of Health Sciences, University of Southampton, UK
Sara Shostak
Department of Sociology, Brandeis University, USA

Peggy Thoits
Department of Sociology, Indiana University, USA

Eric Wright
Departments of Public Health and Sociology, Georgia State University,
USA
LIST OF CONTRIBUTORS

Jason Beckfield Department of Sociology, Harvard University,

Cambridge, MA, USA
Latrica Best Department of Pan-African Studies & Department
of Sociology, University of Louisville, Louisville,
KY, USA
Catherine Bliss Department of Social and Behavioral Sciences,
University of California, San Francisco, CA, USA
Callie H. Burt School of Criminology and Criminal Justice,
Arizona State University, Phoenix, AZ, USA
W. Carson Byrd Department of Pan-African Studies, University of
Louisville, Louisville, KY, USA
Anna Chur-Hansen School of Psychology, The University of Adelaide,
Adelaide, Australia
Shona Crabb Discipline of Public Health, The University of
Adelaide, Adelaide, Australia
Amaya Gilson School of Psychology, The University of Adelaide,
Adelaide, Australia
Patricia Goodson Department of Health & Kinesiology, Texas A&M
University, College Station, TX, USA
Susan R. Hemer Department of Anthropology & Development
Studies, The University of Adelaide, Adelaide,
Australia
Matthew Kearney Department of Sociology, University of Wisconsin,
Madison, WI, USA
Hannah Landecker Institute for Society and Genetics, University of
California, Los Angeles, CA, USA
Martine Lappé Center for Research on Ethical, Legal, and Social
Implications of Psychiatric, Neurologic, &
Behavioral Genetics, Columbia University, New
York, NY, USA
Jason Orne Department of Sociology, University of Wisconsin,
Madison, WI, USA
Brea L. Perry Department of Sociology, Indiana University,
Bloomington, IN, USA
Jason Schnittker Department of Sociology, University of
Pennsylvania, Philadelphia, PA, USA
Laura Senier Department of Sociology & Anthropology and
Department of Health Sciences, Northeastern
University, Boston, MA, USA
Sara Shostak Department of Sociology, Brandeis University,
Waltham, MA, USA
Debra Swoboda Department of Behavioral Sciences, CUNY York
College, Jamaica, NY, USA
THE SOCIOLOGY OF, IN, AND WITH
GENETICS: THE ROLE OF MEDICAL
SOCIOLOGY IN THE ERA OF “-OMICS”
In 2000, the human genome project unveiled the first working draft of a
map of the entire human genome project. Since that time, scientists and the
public have become enamored with the potential of human genetics to
improve the detection, prevention, and treatment of leading causes of
morbidity and mortality. Science magazine named research on human
genetic variation – particularly the discovery of genes associated with
cardiovascular disease, diabetes, cancer, and dozens of other diseases – the
scientific “breakthrough of the year” in 2007 (Pennisi, 2007). The journal’s
writers noted, “it might well be the breakthrough of the decade, perhaps
even the century, for all its potential to alter our view of the world we live
in” (Pennisi, 2000, p. 2220).
In the time since the mapping of the human genome, genetic
technologies have proliferated, making it astoundingly simple, efficient, and
inexpensive to collect and analyze genetic data. Consequently, the field of
genomics has expanded at a dizzying rate, and genetic approaches to human
health and behavior have spread rapidly to other disciplines, including
sociology. The consequences of this development for scientific
advancement and the improvement of population health are complex and
ambiguous, and have been hotly debated both within and outside of
genomics.
Sociology’s response to the surge in genetic science has also been
varied. On one hand, a small but growing contingent of interdisciplinary
sociologists has embraced genomic advances, working largely in the
subfields of health, aging, and demography. On the other hand, sociologists
have leveled strong criticisms against genetic essentialism and determinism,
cautioning that genetic perspectives ignore or downplay the causal role of
social factors in producing disease and health disparities. These
perspectives are reminiscent of the early distinction between sociology of
medicine and sociology in medicine (Straus, 1957).
Sociology has often situated itself in opposition to biologically
deterministic and individualistic explanations of status difference and
behavior that are exemplified by the idea of “hardwired” genetic coding.
Consequently, the of/in distinction has renewed relevance given the higher
ethical and epistemological stakes of genetics relative to the study or
practice of medicine more broadly. The sociology of genetics is reflective of
researchers who employ a sociological lens to study genetic theories,
research, and practice or the position of genetics in society in order to
answer questions of fundamental concern to sociologists. In contrast,
sociology in genetics occurs when sociological tools and concepts are
leveraged to address questions and problems defined as important by and to
genetic or biological scientists.
As with the old of/in debate, there is skepticism on both sides. An
overly critical or even dismissive approach to genomics risks creating a
myopic view of science and knowledge that ignores the complexity of
health and behavior. Moreover, the concern surrounding a sociology of
genetics approach is, in part, pragmatic. Sociology as a discipline is likely
to be left out of key policy debates and research agendas if it rejects genetic
mechanisms rather than integrates them. In contrast, criticisms of sociology
in genetics relate to concerns that sociological concepts and tools will be
coopted and corrupted by the genetic perspective, or that fundamental
theories like social constructionism will be ignored. Despite these concerns,
both approaches have made critical contributions to our understanding of
the role of genetics in health and society.

CONTRIBUTIONS OF SOCIOLOGY OF GENETICS

Much of the work in the sociology of genetics tradition is concerned with

explaining and identifying the consequences of the proliferation of genetic
or molecular explanations for complex social, behavioral, and health
outcomes. This perspective has clear roots in broader theories of
medicalization, which describe the increasing tendency for social problems
to be defined and treated in medical terms and through medical
interventions. Sociologist Abby Lippman coined the term “geneticization”
to describe an ongoing process “… in which differences between
individuals are reduced to their DNA codes, most disorders and behaviors,
as well as physiological variations are defined as at least in part genetic in
origin and the adoption of interventions that employ genetic technologies to
manage problems of health is advocated” (1992, p. 1470). In other words,
physical, emotional, and behavioral variation across individuals is seen as
having genetic causes, while social influences and solutions are minimized
or ignored.
In line with the proliferation of genetic explanations and technologies,
sociologists of genetics deconstruct cultural definitions of genes as the true
and stable nature of personhood (i.e. “genetic essentialism”; Nelkin &
Lindee, 1995). DNA has been elevated to the status of religion, becoming a
contemporary medical version of the soul. In this view, genes are seen as
deterministic of traits and behaviors such that having a genotype associated
with a particular outcome leads inevitably to a phenotypic manifestation
(i.e., physical or behavioral expression of one’s genotype). Not only is this
an inaccurate view of the magnitude of the contribution of genetics to
human traits, but genetic essentialism may increase the stigmatization of
conditions that are viewed as immutable or inevitable, such as mental
illness (Phelan, 2005).
Sociologists of genetics also raise concerns about genetic essentialist
views of race and implications of this research for human applications of
genetic technology. Scientists have identified “ancestry-informative
markers” (AIMs), or sets of genetic variants that are present in substantially
different frequencies across populations from different geographic regions.
For example, the Duffy Null allele is present in almost all individuals with
an ancestor originating from Sub-Saharan Africa. AIMS are used by genetic
researchers to adjust for population stratification, but have been heavily
criticized by many sociologists. Because knowledge production around the
genetic origins of race is itself rooted in socially defined prejudices and
assumptions, genetic perspectives on race have been deemed an inherently
racist dialectic (Duster, 2003). Moreover, categorizing individuals, races,
and ethnic groups according to their genetic variation will inevitably lead to
eugenic abuses.