Northeastern University – Department of Sociology and Anthropology
Spring 2013
SOCL 7257
CONTESTED ENVIRONMENTAL ILLNESSES
Phil Brown, Professor of Sociology
and Anthropology
318 INV 373-4707
518 Holmes 373-4993
class meets:
Tuesday 4:30-6:30PM
Office Hours:
p.brown@neu.edu
This seminar is oriented to graduate students, and to advanced undergraduates who have
some background in sociology, anthropology, environmental studies, or health sciences.
Contested illnesses are diseases or conditions in which there is dispute over environmental
causation. Sometimes these diseases/conditions are well-established, e.g. asthma and breast
cancer, while other times the diseases/conditions are not accepted as real, e.g. Gulf War illnesses
and multiple chemical sensitivity. For many diseases/conditions attributed to environmental and
occupational exposure, the disease/condition and/or its causes are discovered by lay people in
workplaces and communities. While lay involvement is important in such cases, the contested
illnesses perspective views goes beyond traditional notions of lay involvement, to argue that the
role of organized social movements and social movement organizations is crucial in the process
of recognizing and acting on diseases and conditions of known or potential environmental
causation. This perspective places much emphasis on both political economic and ideological
factors as determinants of the contestation around these diseases and conditions. This perspective
focuses on the structure and alterations of public understanding, scientific knowledge, and public
policy, as acted on in the spheres of government, science, and public life. The contested illnesses
approach is situated in the intersection of environmental health and environmental justice. Our
sources of intellectual legacy are diverse, encompassing environmental sociology, medical
sociology, medical anthropology, public health, science studies, history of medicine, history of
science, environmental health, community-based participatory research, environmental justice,
and environmental public health. Students will read research proposals to learn how to write
them and to understand how major research projects are developed and organized.
Course Structure
This seminar assumes a willingness to engage in critical reading and active discussion. It
requires an individual research project, to be presented orally and as a paper due on the last day
of the seminar. Papers will generally range from 12-20 pp., but can be longer if necessary.
Students should select topics by the third week in order to allow time for my comments and
approval. A 1-2 pp outline of the topic should be handed in that day, including research
questions and data sources. I will supply a list of particular topics I am interested in, but students
are free to choose another.
Each weekly seminar session will include a variety of activities:
• Music
• Report on visit to the journal shelves
• Report on visit to assigned websites
• Report on an article in the popular press from Above the Fold
• An introductory presentation by the professor
• Focused presentation by one student, followed by group discussion of the readings
Readings
Readings include one book to be purchased, and most readings are articles and chapters on the
course website.
Book available at Bookstore:
Nancy Langston, Toxic Bodies: Hormone Disruptors and the Legacy of DES (Yale)
Phil Brown, Rachel Morello-Frosch, Stephen Zavestoski, and the Contested Illnesses Research
Group, Contested Illnesses: Citizens, Science and Health Social Movements (Columbia)
**Three brief readings, available on Blackboard, are required prior to attending first session
Films – There will be several films posted on Blackboard
__________________________________________________________________________
1) Introduction
read prior to attending first session:
Sandra Steingraber, “Environmental Amnesia” Orion May/June 2008
Steve Lerner “Tallevast, Florida: Rural Residents Live Atop Groundwater Contaminated by
High-Tech Weapons Company”
Margaret Kripke (President’s Cancer Panel) – Commonweal interview, Feb. 7, 2011: Read on
Blackboard or get podcast:
http://www.commonweal.org/new-school/audiofiles/podcast/97_m_kripke_final_w_intro.mp3
-More useful info on Presidents’s Cancer Panel is available at:
http://www.healthandenvironment.org/cancerpanel
-Full report of President’s Cancer Panel can be downloaded at:
http://deainfo.nci.nih.gov/advisory/pcp/pcp.htm)
2) Definitions, theories, research directions – Contested illnesses and health social movements
The following from Phil Brown, Rachel Morello-Frosch, Stephen Zavestoski, and the Contested
Illnesses Research Group, Contested Illnesses: Citizens, Science and Health Social Movements
(Columbia University Press; hereafter Contested Illnesses):
Rachel Morello-Frosch, Phil Brown, and Stephen Zavestoski , “Introduction: Environmental
Justice and Contested Illnesses”
Phil Brown, Stephen Zavestoski, Sabrina McCormick, Brian Mayer, Rachel Morello-Frosch,
Rebecca Gasior Altman, Crystal Adams, Elizabeth Hoover, and Ruth Simpson ,“Embodied
Health Movements: Uncharted Territory in Social Movement Research”
Phil Brown , “Qualitative Methods in Environmental Health Research”
Phil Brown, Rachel Morello-Frosch, and Stephen Zavestoski, “New Approaches to Methods and
Research Design”
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Film:”Living Downstream” by Chanda Chevannes
3) Definitions, theories, research directions – Other approaches
Randall Packard, Peter Brown, Ruth Berkelman, and Howard Frumkin “Introduction: Emerging
Illness as Social Process” pp. 1-35 in Emerging Illnesses and Society: Negotiating the Public
Health Agenda 2004 Johns Hopkins University Press
Joseph Dumit “Illnesses You Have to Fight to Get” Social Science and Medicine 2006
62(3):577-590
Sarah Nettleton “’I Just Want Permission to be Ill: Toward a Sociology of Medically
Unexplained Symptoms” Social Science and Medicine 2006 62:1167-78
Pamela Moss and KatherineTeghtsoonian, “Power and Illness: Authority, Bodies, and Context.”
Chapter 1 in Contesting Illnesses: Processes and Practices
Paul Rabinow and Nikolas Rose “Biopower Today” Biosocieties 2006 1:195-217
Steve Wing, “Limits of Epidemiology”
**Paper topics due today
4) Cases examples of contested illnesses
The following in Contested Illnesses:
Phil Brown, Stephen Zavestoski, Alissa Cordner, Sabrina McCormick, Joshua Mandelbaum,
Theo Luebke, and Meadow Linder, “A Narrowing Gulf of Difference?: Disputes and
Discoveries in the Study of Gulf War–Related Illnesses
Phil Brown, Brian Mayer, Stephen Zavestoski, Theo Luebke, Joshua Mandelbaum, Sabrina
McCormick, and Mercedes Lyson, “The Health Politics of Asthma: Environmental Justice
and Collective Illness Experience”
Sabrina McCormick, Phil Brown, Stephen Zavestoski, and Alissa Cordner, “The Personal Is
Scientific, the Scientific Is Political: The Public Paradigm of the Environmental Breast
Cancer Movement”
Maren Klawiter, “Breast Cancer in Two Regimes: The Impact of Social Movements on Illness
Experience” Sociology of Health and Illness 2004, 26:45–874
Michelle Murphy “Occupational Health from Below: The Women Office Workers’ Movement
and the Hazardous Office” Pp. 191-223 in Randall Packard, Peter Brown, Ruth Berkelman, and
Howard Frumkin, Emerging Illnesses and Society: Negotiating the Public Health Agenda 2004
Johns Hopkins University Press
Martha Balshem “A Cancer Death”, from Cancer in the Community
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5) The lineage of a research project: The Household Exposure Study – From Cape Cod to
Northern California
NIEHS proposal: “Linking Breast Cancer Advocacy and Environmental Justice”
The following in Contested Illnesses:
Rachel Morello-Frosch, Julia Green Brody, Phil Brown, Rebecca Gasior Altman, Ruthann A.
Rudel, Carla Pérez, and Alison Cohen, “‘Toxic Ignorance’ and the Right-to-Know:
Assessing Strategies for Biomonitoring Results Communication in a Survey of Scientists
and Study Participants”
Phil Brown, Rachel Morello-Frosch, Julia Green Brody, Rebecca Gasior Altman, Ruthann
Rudel, Laura Senier, and Carla Perez, “IRB Challenges in Multi-Partner Community-based
Participatory Research”
Rebecca Gasior Altman, Julia Brody, Ruthann Rudel, Rachel Morello-Frosch, Phil Brown, and
Mara Averick, “Pollution Comes Home and Gets Personal: Women’s Experience of
Household Toxic Exposure”
Crystal Adams, Phil Brown, Rachel Morello-Frosch, Julia Green Brody, Ruthann Rudel, Ami
Zota, Sarah Dunagan, Jessica Tovar, and Sharyle Patton, “Disentangling the Exposure
Experience: The Roles of Community Context and Report-back of Environmental Exposure
Data” Journal of Health and Social Behavior 2011 52 (2):180-196.
Julia Green Brody, Rachel Morello-Frosch, Phil Brown, Ruthann A. Rudel, Rebecca Gasior
Altman, Margaret Frye, Cheryl C. Osimo, Carla Perez, and Liesel M. Seryak, “Improving
Disclosure and Consent: “Is It Safe?” New Ethics for Reporting Personal Exposures to
Environmental Chemicals” American Journal of Public Health, 2007 97:1547-1554.
Julia Green Brody, Rachel Morello-Frosch, Ami Zota, Phil Brown, Carla Pérez, and Ruthann A.
Rudel, “Linking Exposure Assessment Science with Policy Objectives for Environmental Justice
and Breast Cancer Advocacy: The Northern California Household Exposure Study” American
Journal of Public Health 2009 99:S600-S609.
6) The Household Exposure Study – Further developments and research trajectories
The following in Contested Illnesses:
Phil Brown, Rachel Morello-Frosch, Julia Green Brody, Rebecca Gasior Altman, Ruthann
Rudel, Laura Senier, and Carla Perez, “IRB Challenges in Multi-Partner Community-based
Participatory Research”
Phil Brown, Julia Green Brody, Rachel Morello-Frosch, Jessica Tovar, Ami R. Zota, and
Ruthann A. Rudel, “Measuring the Success of Community Science: The Northern California
Household Exposure Study.” Manuscript under review
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NIEHS proposal: “Ethical and Legal Challenges in Communicating Individual Biomonitoring
and Personal Exposure Results to Study Participants: Guidance for Researchers and Institutional
Review Boards.”
7) Emerging contaminants and policy
Sarah Vogel. “The Politics of Plastics: The Making and Unmaking of Bisphenol A ‘Safety’”
American Journal of Public Health. 2009. 99:S559–S566
Phil Brown and Alissa Cordner, “Lessons Learned from Flame Retardant Use and Regulation
Could Enhance Future Control of Potentially Hazardous Chemicals” Health Affairs 2011 30
(5):1-9. FRs
Alissa Cordner and Phil Brown, “Moments of Uncertainty: Ethical Considerations and Emerging
Contaminants,” manuscript under review
Kathleen Curtis and Bobbi Chase Wilding, Is It In Us?: Chemical Contamination in Our Bodies
--Toxic Trespass, Regulatory Failure & Opportunities for Action (Body Burden Work Group and
Commonweal Biomonitoring Resource Center)
8) Current research and policy directions
Selected articles from Health Affairs special issue on environmental health-May 2011
Linda S. Birnbaum and Paul Jung, “From Endocrine Disruptors to Nanomaterials: Advancing
Our Understanding of Environmental Health to Protect Public Health”
Kenneth Olden, Nicholas Freudenberg, Jennifer Dowd, and Alexandra E. Shields, “Discovering
How Environmental Exposures Alter Genes Could Lead to New Treatments For Chronic
Illnesses”
Philip J. Landrigan and Lynn R. Goldman, “Children’s Vulnerability to Toxic Chemicals: A
Challenge and Opportunity to Strengthen Health And Environmental Policy”
Rachel Morello-Frosch, Miriam Zuk, Michael Jerrett, Bhavna Shamasunder and Amy D. Kyle,
“Understanding the Cumulative Impacts of Inequalities in Environmental Health: Implications
for Policy”
Patrice Sutton, David Wallinga, Joanne Perron, Michelle Gottlieb, Lucia Sayre, and Tracey
Woodruff, “Reproductive Health and the Industrialized Food System: A Point of Intervention for
Health Policy”
Sarah A. Vogel and Jody A. Roberts, “Why the Toxic Substances Control Act Needs An
Overhaul, and How to Strengthen Oversight of Chemicals in the Interim”
Tracey J. Woodruff, Thomas A. Burke, and Lauren Zeise, “The Need for Better Public Health
Decisions on Chemicals Released Into Our Environment”
9) When science fails: Iatrogenic effects of an ineffective drug, and its major impacts
Nancy Langston, Toxic Bodies
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10) Working in the environmental health field as a sociologist: Boundaries, disciplines, and
interdisciplinarity
Sherry Baron, Raymond Sinclair, Devon Payne-Sturges, Jerry Phelps, Harold Zenick, Gwen W.
Collman, and Liam R. O’Fallon, “Partnerships for Environmental and Occupational Justice:
Contributions to Research, Capacity and Public Health” American Journal of Public Health.
2009: 99:S517–S525.
Barbara Prainsack, Mette N. Svendsen, Lene Koch and Kathryn Ehrich, “How do we
collaborate? Social science researchers’ experience of multidisciplinarity in biomedical settings”
BioSocieties (2010) 5, 278–286.
Mathieu Albert, Suzanne Laberge, Brian D. Hodges, Glenn Regehr, and Lorelei Lingard,
“Biomedical Scientists’ Perception of the Social Sciences in Health Research.” Social Science &
Medicine (2008) 66:2520-2531
Janet K. Shim and L. Katherine Thomson, “The End of the Epidemiology Wars?:
Epidemiological ‘Ethics’ and the Challenge of Translation. Biosocieties (2010) 5, 159-179.
11) Cultural components and alternative directions for the future
Alan Radley and Susan E. Bell, “Artworks, Collective Experience And Claims For Social
Justice: The Case Of Women Living With Breast Cancer” Sociology of Health & Illness. 2007.
29: 366–390,
Susan Bell, DES Daughters: Embodied Knowledge and the Transformation of Women's Health
Politics (excerpts)
Linda Silka, “Rituals and Research Ethics: Using One Community’s Experience to Reconsider
the Ways that Communities and Researchers Build Sustainable Partnerships”
Michael Lerner “The Age of Extinction and the Emerging Environmental Health Movement”
Film: “Blue Vinyl” by Judith Helfand
12) Student presentations
* Papers due today
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