Vol. 09 Issue 2, Spring 2004
Sabrina McCormick (Brown University), Phil Brown (Brown University),
and Stephen Zavestoski (University of San Francisco)
Editors note: This piece is an edited version of a longer article analyzing what the authors have called the environmental breast cancer movement. Their sociological research, based on interviews and observations, seeks to situate their findings and analyses of this movement within social movements theory. For The Ribbon version, we have focused on those aspects of the work which describe the origins, nature, and contributions of the environmental breast cancer movement, and to provide just a taste of how social scientists are finding interest in and focusing research on breast cancer activism. For a more thorough understanding of this work, please contact the authors for the complete paper: firstname.lastname@example.org
Since the early 1990s, the breast cancer movement has advanced a new public paradigm centered on environmental causes of breast cancer. We describe the framework, history, and strategies of that new national environmental breast cancer movement, and demonstrate the new concept of a “boundary movement.”
Breast cancer surfaced on the public agenda in the 1970s and 1980s on the second wave of feminism, as women began to present their personal stories of the disease to the public. It slowly moved from being conceived of as a private experience that could be overcome with a positive attitude and a supportive family, to being politically relevant, especially in terms of options for treatment. As women gained more control over treatment options, a breast cancer advocacy movement emerged, focused on increasing research funding and finding a cure for the disease. While activists criticized the medical control of their bodies, they at first did not challenge the biomedical model that focused breast cancer research on methods for treatment, constrained medical strategies to lessen the possibility of getting breast cancer, and promoted individualistic methods for cancer prevention. As the breast cancer movement became more powerful, and the environmental movement put more attention on health effects of toxics, a new breast cancer movement that combined the two emerged to challenge the biomedical model and present what we term a new “public paradigm.”
The Environmental Breast Cancer Movement as a Boundary Movement
The public paradigm promoted by the environmental breast cancer movement focuses on the health effects of environmental toxins. Our notion of a public paradigm builds upon Krimsky’s (2000) concept of a “public hypothesis” that is formed when the public feels it has a stake in scientific study, debates and consequent outcomes, and therefore demands to participate. In this case, activists base their new paradigm on the precautionary principle, which places the burden of proof for health effects of chemicals on the producers rather than the consumers, and declares that proof of safety should exist before chemicals are utilized (Raffensperger and Tickner, 1999). In order to do this, the environmental breast cancer movement works towards four goals: 1) to broaden public awareness of potential environmental causes of breast cancer; 2) to increase research into environmental causes of breast cancer; 3) to create policy which could prevent environmental causes of breast cancer; and 4) to increase activist participation in research.1 Creating a new public paradigm necessitates participation in science, and at least symbolic influence over its formation.
Such influence requires a unique type of social movement—what we term boundary movements. Boundary movements are social movements and their constituent organizations that move between social worlds and realms of knowledge. In so doing, they blur traditional distinctions, such as those between movement and non-movement “actors” and laypeople and professionals. In particular, four characteristics define boundary movements.
First, they attempt to reconstruct the lines that demarcate science from non-science. They push science in new directions, and participate in scientific processes as a means of bringing previously unaddressed issues and concerns to the clinical and bench scientists.
Second, boundary movements blur the boundary between experts and laypeople. Some activists informally become experts by using the Internet and other resources to arm themselves with medical and scientific knowledge that can be employed in conflicts with their medical care providers. Others gain a more legitimate form of expertise by working with scientists and medical experts to gain a better level of understanding of the science underlying their disease. Through this process, boundary organizations gain power and authority by obscuring the boundary between expert and layperson.
Third, boundary movements transcend the traditional conceptions of what is or is not a social movement. They do this by moving fluidly between lay and expert identities, and across various organizational forms. Their fluidity allows them to move in and out of organizations and institutions in ways that traditional social movement activists do not. Raising money to fund their own research exemplifies how they are boundary organizations, since doing so blurs the boundary between previously distinct and autonomous institutions: science and civil society.
A fourth characteristic of boundary movements is that they use boundary “objects” (Star and Griesemer, 1989), things or activities that overlap different social worlds and are malleable enough to be used by different parties. Mammography machines, genetic testing for breast cancer, patents on the BRCA-1 sequence, pharmaceuticals, Breast Cancer Awareness Month, and Avon’s “Breast Cancer Walk” are such boundary objects that have a redefined role in the environmental breast cancer movement. These things and activities transect a variety of contexts, maintaining enough meaning similarity in each to create coherence across circumstances while being used distinctly in each one.
A boundary movement crosses two or more social movements, while blurring the boundaries of those separate movements. They take the best from surrounding movements, and also draw on the crossing over of members from one organization to another and from one movement to another. Because ideas, values, and action strategies move from one movement to another, people find it easier to participate in other groups and movements. (Alternately, individuals can identify with and participate in such a movement, without having to be part of a specific organization.) The interaction among boundary movement organizations and groups is made possible by the fluidity with which these groups can move back and forth between organizational cultures, and between the roles of activists and experts. This fluidity allows professionals to play varying roles over time, occasionally being part of the movement as either members or “advocacy scientists” (Krimsky, 2000), other times being somewhat detached scientists, and other times being uninvolved.
Environmental breast cancer movement actors in different locations have a variety of relationships with the state, other movements, or experts, while maintaining a unifying movement philosophy. In our research we found that activists in one region found it easy to work with mainstream politicians, while others were more likely to link up with AIDS, women’s health, and toxics activists, and yet others found allies among those involved in precautionary principle organizing. Local context shapes the way each area approaches the problem, even though they are all part of one overall social movement.
Social and Scientific Construction of The Breast Cancer Epidemic
Breast cancer rates have been increasing steadily for at least fifty years, to the point where in the United States a woman is diagnosed with breast cancer every three minutes and another woman will die of breast cancer every twelve minutes. There will be an estimated 211,300 new cases of invasive breast cancer and 55,700 cases of in situ breast cancer diagnosed this year alone (American Cancer Society, 2003), and it is the leading cause of death for women under the age of 55. Due to public attention in the past twenty years largely caused by the breast cancer movement, the popular conception of breast cancer has changed radically from a private occurrence to a politicized experience. The breast cancer movement has addressed issues of care for breast cancer patients, knowledge about treatment options, especially in regard to mastectomies, lumpectomies and radiation, support for those affected by the disease, and increased research funding. Current government action includes the partnership between government and non-government sectors in the National Action Plan on Breast Cancer, established by President Clinton in 1994, among other projects. Private sector action includes the first National Breast Cancer Awareness Month, which promotes public awareness of breast cancer and usage of mammography as early detection, first held in 1985. Today, fundraising walks and runs during that month involve tens of thousands of people every year. The movement’s other successes include the production of a breast cancer stamp, whose additional cost above normal postage is given to governmental research institutions to further breast cancer research, and the Shop for the Cure campaign, whose merchants and credit card companies give a portion of the proceeds to breast cancer foundations. The general breast cancer movement’s success can also be seen in the amount of breast cancer research dollars, which have increased from $90 million in 1990 to $600 million in 1999 (Reiss and Martin, 2000), and in the ability to win federal legislation, such as the Breast and Cervical Cancer Treatment Act of 2000.
The environmental breast cancer movement has reframed the successes of the broader breast cancer movement in order to focus on potential environmental causes and change how breast cancer is researched and publicly perceived. Some of those general movement successes are criticized by the environmental breast cancer movement, or by what Barbara Brenner (2000) terms the “political breast cancer movement.”2 For example, for years people took for granted the position of the American Cancer Society, National Cancer Institute, and other parts of the “cancer establishment” that “mammography is the best form of prevention.” Environmental breast cancer activists argue that once a tumor is detected prevention has failed since the tumor now exists. Activists. They are also challenging the corporate control of Breast Cancer Awareness Month, and have mounted a campaign to have breast cancer stamp revenues shifted to the National Institute of Environmental Health Sciences from the National Cancer Institute.
Concurrent to the change in social perception, there has been scientific debate concerning the causes and treatment of breast cancer. The dominant scientific paradigms used in studying breast cancer have been circumscribed by the biomedical model and have consequently focused on individual level factors like diet, exercise, age at first birth, and genetic makeup (Kant et al., 2000; Thompson, 1992). However, these studies have also shown that such factors account for a limited number of cases. The discovery of the BRCA-1 gene mutation led to a large amount of attention devoted to genetic causes even though it has since been recognized that genetic causes only account for some five to ten percent of all cases (Davis and Bradlow, 1995). Activists also point to the fact the genome does not change rapidly enough to account for the increase in breast cancer incidence which, for women who lived to be age eighty, was 1 in 20 in 1964 and is now 1 in 8 over a lifetime.
A growing body of scientific literature has been exploring environmental causes of breast cancer. First these studies showed support for environmental causation, as in the case of Hunter’s 1993 study that correlated DDE, the chemical breakdown product of DDT, a pesticide commonly used worldwide, and increased risk of breast cancer. Later studies (Wolff et al., 1993; Hunter et al., 1997) showed equivocal results. The most recent research has demonstrated the complexity of studying breast cancer causes by using different types of evidence, such as twin studies (Lichtenstein et al., 2000) and specific groupings or breakdowns of chemicals (Dorgan et al., 1999; Hoyer et al., 1999; Hoyer et al., 2000; Guttes et al.,1998). These studies demonstrate the wide scientific dialogue taking place around the legitimacy of claims pointing to environmental contaminants and increased breast cancer risk.
New breast cancer research employing innovative methods and lay involvement has been promoted by breast cancer activists dedicated to investigating potential environmental causes. The three areas we examined – the San Francisco Bay area, the Boston/Cape Cod area in Massachusetts, and Long Island, New York – have higher breast cancer incidence than much of the rest of the United States, and public attention has led to numerous studies of these areas (Aschengrau et al., 1996; Robbins et al., 1997; West et al., 1998). A combination of local and national contextual factors influenced the development of the movement, research, and policy in each location. Local factors include media response, the political climate and political connections, pre-existing social movements, the response of the local governmental institutions, and potential funding sources. A general movement framework unites the three locales into a national movement.
We conducted 29 semi-structured interviews with activists and scientists in movement organizations in the three previously mentioned locations, and with scientists in those locations. Table 1 describes the breakdown of interviews with movement actors and scientists in each locale. A site was operationalized by the existence of multiple activist organizations promoting increased public and scientific awareness of environmental causes of breast cancer and citizen/science alliances between these activists and scientists. Such scientists were interviewed in addition to activists. Ethnographic observations (11) were conducted to supplement the interviews, primarily at Silent Spring Institute in Newton, MA. These included public meetings where the researchers presented their work and their larger perspective, scientific review panel meetings, and science/activist conferences. While the interviews were the primary source of analysis, the observations provided a broader contextual picture. For instance, it was possible to view the approaches taken by Silent Spring Institute to bring their scientific work to lay activist audiences, or in another case, to see how Silent Spring responded to critics at a scientific review panel. Printed materials from each organization were also collected in order to better understand their political stance and public activities.
The Framework for Activism – Personal/Scientific/Political
Our interviews with activists demonstrate the importance of the personal experience as a political and scientific tool for the movement as a whole. Activist knowledge of self-exposure to environmental toxics first led them to a new form of movement activity and second, to challenging scientific perceptions of breast cancer. Our data show that activists believe clinical and support services are crucial, but not enough. For example, the traditional breast cancer movement response is to provide support groups which give emotional sustenance, while the environmental breast cancer movement emphasizes a model of political action which facilitates empowerment in the political realm, replacing the primary focus on individual responsibility with a focus on the responsibility of corporations, government institutions and science.
All interviewees, both scientists and activists, reported a strong belief that activism and social movements play a critical role in advancing research, educating the public, and changing policy about environmental causes of breast cancer. Activists felt that social movements were especially instrumental to the development of research into environmental causation. One long-time activist emphasized the difference between the activist and scientific perspective:
Changes that have to happen around breast cancer and all the things that influence it are going to come from the ground up. They’re not going to come from the top down … If you think about it, activists were the first to argue for this, and some of the scientific community has been sort of dragged along.
Empowerment and politicization for movement activists often involves utilizing knowledge of individual environmental exposures to inform science. One example is the citizen/science alliance where scientists collaborate with community groups to search for potential environmental causation of diseases (more detail below). Another example is how epidemiologists teach lay activists enough science so that they can engage with scientists and officials, as with the National Breast Cancer Coalition’s Project LEAD (Leadership, Education, and Advocacy Development), where epidemiologists provide breast cancer activists with sufficient scientific capacity to serve on federal review panels (Dickersin et al., 2001). Such a program helps facilitate a process of boundary crossing to advance science and make lay claims related to environmental causation credible in the eyes of science.
Social Movement Links to Environmental Breast Cancer Activism
The “personal as political” framework brings together multiple social movement perspectives in order to highlight the political and economic issues in breast cancer causation, research, and treatment, to challenge traditional epidemiological models, and to draw attention to unrecognized geographic disease patterns. The environmental breast cancer movement appears to be a merging of actors and agendas from the environmental movement and the breast cancer advocacy movement, and is rooted in the larger feminist movement, the women’s health movement, and the AIDS movement. This hybridization of movement activity is representative of the boundary crossing that movement actors have accomplished without diminishing the distinct nature of their own agendas.
By the time the environmental breast cancer movement had begun in the early 1990s, the national breast cancer movement had already achieved major successes in several different venues. In fact, the first breast cancer movement activity took place in 1952 in the form of Reach for Recovery, a self-help organization (Weisman, 1998). Breast cancer activism took further shape in the 1970s and ‘80s as a part of the general women’s health movement. In each one of the locales that we analyze, general breast cancer organizations preceded the development of the environmental breast cancer movement and these activists often emerged from the general breast cancer movement. Their organizational strength also partially emerged from connections to the National Breast Cancer Coalition, and other previously established organizations. The origination of the movement in the breast cancer movement has simultaneously provided a strong basis of activism from which to organize, and some tension between movement actors as the philosophy of the movement has moved away from that of general breast cancer activism. Interviews with activists showed that despite these differences, there was a clear linkage between the former and latter movements.
The environmental movement provided legitimacy for environmental causation theories and offered an environmental activist network that could provide support. As environmental activists became more sophisticated in focusing on health effects, this provided a logical basis for connecting to breast cancer activism. The awareness created by a national grassroots environmental movement provided a basis from which the public could understand potential environmental causation and from which government could recognize a constituency of voters. The movement also emerged from the previous women’s health movement that has worked to increase funding for research on women’s illnesses, to educate women about their bodies, to include women in clinical trials, to criticize the medicalization of women’s experiences, and to fight for self-determination of health care options (Ruzek et al., 1997). While the environmental breast cancer movement is primarily concerned with a single disease, it broadens the implications of a health movement to address environmental issues, lay involvement in science, and corporate responsibility.
The environmental breast cancer movement benefited from the feminist movement in terms of increased public attention to women’s issues, existing mobilized women’s groups, tactics for activism, and ideological foundations. Feminism has been instrumental in developing a critique of both the lack of women’s involvement in science, and the construction of knowledge that does not consider women’s experiences. While most movement activists do not articulate a direct link between this movement and the broader women’s movement, such a connection is often very clear through their philosophical stance and groups’ mission statements. For instance, one founder of a movement group, also involved in a network of environmental organizations, called breast cancer a wedge issue for larger gender equality and environmental issues:
We want to share leadership, and bringing ourselves [women] into balance in this issue will help to bring the whole planet into balance. I do think that environmental health, using breast cancer as a wedge issue towards that larger issue, is the issue of the millennium.
While they generally did not connect their activities to feminism, some activists did note how the AIDS movement influenced their methods. The AIDS movement has been an exemplary model for activists in the movement in terms of citizen/science alliances, as well as public education and social protest. The methods utilized by AIDS activists, such as working with researchers to change scientific study, provided an example for future breast cancer activism. Additionally, like the environmental breast cancer movement, AIDS activists have utilized public protest tactics to subvert the social perception of AIDS victims, as well as generating more funds for research and activist involvement in research (Epstein, 1998).
The citizen/science alliance specifically exemplifies the “analytical blurrings” that take place through boundary movements. Expert and lay roles are altered and typically rigid scientific practices take a new form as a result of these blurrings. The citizen/science alliance serves a key role by: 1) supporting activism; 2) changing attitudes and practices of scientists and activists; and 3) providing a new value structure to some research.
These collaborations between citizens and scientists have had ramifications for research, as well as perceptions of scientists and activists. Activists described drastic changes in their expectations about what science could prove in terms of environmental causation, their perception of the length of time necessary to conduct research, and the processes involved. They often became so educated about the methodology involved that they had specific recommendations for ways science could be improved in the future. Such education includes the National Breast Cancer Coalition’s Project LEAD, which offers intensive orientation programs for advocates to enable them to serve on grant review panels and scientific advisory boards for major studies. For activists without prior experience with researchers, their feelings toward scientists changed from fear and anxiety to mutual respect and comfort. One woman who had worked on high-level government advisory panels recounted that:
The thing that I came away with that was most surprising was how much the scientists and the MDs have come to value the activist perspective on these panels … not only just putting a face on the statistics, but also … they appreciate that… you ask the questions: why is this relevant, who cares?
This quote exemplifies a theme we found running throughout interviews regarding the alliances, that it was a transformative experience for both parties in which they learned to appreciate the very different perspective of the other group. This occurred despite initial reservations.
We might expect scientists to worry that their legitimacy would be threatened if they worked with laypeople. Scientists involved in alliances in this movement described some initial fear, but general mutual respect between themselves and activists. They often greatly appreciated the input activists supplied, in addition to their efforts that brought research projects into existence. Of course, this may be a biased sample of scientists who were previously open to activist involvement in research, even though they came from a wide diversity of backgrounds and experience.
Apprehension and prejudice on the part of both activists and scientists against the other group were the most serious obstacles to alliances. Still, most laywomen felt that they were respected and that their work was worthwhile and transformative. These initial fears and prejudices were verbalized by one activist whose experience demonstrated how this transformation took place:
I think there is a respect for bright people and I think the assumption often is that activists are going to be hysterical women. And I think once most scientists realize that we’re not hysterical women, they find themselves, you know, intrigued. And they might come to the table with a lot of prejudices and worries but I have rarely seen it continue to be a problem.
Activist involvement in science pushes scientists to examine why they ask certain questions and not others, why they use certain methodologies, and more importantly, pushing them to examine how their research affects women with breast cancer. An activist provided an emblematic example of such questioning: a lay member of a review panel listened to a scientist give an extremely high score to a proposal simply on the basis of excellent methodology. When the laywoman pressed the scientist on the actual relevance of the project, the scientist realized the error and revised the score downward. Alliances between scientists and laypeople are valuable not only for environmental breast cancer activists, but also for many other arenas of environmental health. Citizen/science alliances represent one of the most significant legacies of this movement.
The environmental breast cancer movement’s multilevel successes include the significant amount of public awareness that has been generated, the amount of research that has been performed, the dialogue that has been created in the scientific community, and the development of citizen/science alliances. Our examination of the movement provides important lessons about the character and components of health social movements, and we, expect, other social movements as well.
As we have shown, this social movement developed as a boundary movement that crossed the lines of a number of other social movements. While local culture variations make each locale of the movement somewhat different, we believe that there are sufficient similarities to justify viewing this as a coherent national movement. It exemplifies social movement activity at the intersection of health and the environment, which is quite possibly the largest new arena of social movements, encompassing activism around lead poisoning, asthma, toxic wastes, nuclear power, food additives, biotechnology/genetically modified organisms, toxics reduction, and the precautionary principle (Brown et al., 2002. This case study leads us to predict that future social movements, especially involving health and environment issues, will arise in similar boundary-crossing fashion. Social movements have an enormous range of facets: political challenges to governmental authority, scientific challenges to medicine and science, organizational challenges to health charities and related organizations, contention for power and authority among various organizations within a movement, cultural manifestations, and activities to increase public awareness. The environmental breast cancer movement exemplifies these multiple facets, and shows how they are interlinked. Most prior social movement theory does not provide for such a perspective, so we view this as a new way to examine social movements.
Boundary movements such as the environmental breast cancer movement are centrally concerned with democratic participation in science and in social policy involving that science. The movement shows the strength of the abilities of ordinary citizens in this movement to learn science, to demand a seat at the table for reviewing research proposals, to collaborate in research enterprises, and to press for broad extensions of citizens’ right to participate in all aspects of society. Thus, the environmental breast cancer movement continues in a long line of social movements that seek to expand democracy, but does it in a qualitatively new fashion that holds great promise for empowering citizens, while at the same time helping to improve scientific practice, improve the health of the public, and reshape the priorities of science and medicine.
This research is supported by grants to the first author from the Brown University Graduate School and Department of Sociology, and to the second author from the Robert Wood Johnson Foundation’s Investigator Awards in Health Policy Research Program (Grant #036273), the National Science Foundation Program in Social Dimensions of Engineering, Science, and Technology (Grant # SES-9975518), and the Brown University Salomon Faculty Research Award Program. We thank Rebecca Gasior, Meadow Linder, Theo Luebke, Josh Mandelbaum, Brian Mayer, Rachel Morello-Frosch, and Pamela Webster for their collaboration in the larger project from which this work derives, and their contributions to thinking about this paper. We thank Elizabeth Cooksey and Sally Zierler for helpful readings of the manuscript. We are grateful to all the organizations and activists who facilitated our research, and especially to the scientists and staff of Silent Spring Institute for permitting us access to their work. We thank the Eastern Sociological Society for permission to print this edited version of “The Personal Is Scientific, The Scientific Is Political: The Public Paradigm of the Environmental Breast Cancer Movement,” published in Sociological Forum, 2003 18:545-57.
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