The Public Shaping of Medical Research

Patient Associations, Health Movements and Biomedicine

Peter Wehling, Willy Viehöver, Sophia Koenen

• Publisher: Routledge
• Year: 2014
• ISBN:
  9781317584469
• Edition: 1
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Patient organizations and social health movements offer one of the most important and illuminating examples of civil society engagement and participation in scientific research and research politics. Influencing the research agenda, and initiating, funding and accelerating the development of diagnostic tools, effective therapies and appropriate health-care for their area of interest, they may champion alternative, sometimes controversial, programs or critique dominant medical paradigms. Some movements and organizations advocate for medical recognition of contested illnesses, as with fibromyalgia orADHD, while some attempt to "de-medicalize" others, such as obesity or autism.
Bringing together an international selection of leading scholars and representatives from patients' organizations, this comprehensive collection explores the interaction between civil society groups and biomedical science, technology development, and research politics. It takes stock of the key findings of the research conducted in the field over the past two decades and addresses emerging problems and future challenges concerning the interrelations between health movements and patient organisations on the one hand, and biomedical research and research policies on the other hand. Combining empirical case studies with conceptual discussion, the book discusses how public participation can contribute to, as well as restrict, the democratization of scientific knowledge production.
This volume is an important reference for academics and researchers with an interest in the sociology of health and illness, science and technology studies, the sociology of knowledge, medical ethics or healthcare management and research, as well as medical researchers and those involved with health-related civil society organizations.

Part I

Empirical cases and theoretical perspectives

1 A seat at the table, “a lab of our own” and working with what we know now

How the US environmental breast cancer movement shapes research

Lori Baralt

Introduction

Breast cancer is the most common cancer in women in the United States and the second leading cause of cancer death in US women after lung cancer (American Cancer Society 2013). Given the prevalence of breast cancer, particularly in the US, where one in eight women will develop breast cancer in her lifetime, it is not surprising that many women became concerned and began to advocate for more research on this disease. While early breast cancer advocacy in the 1970s and 1980s focused on providing support for women with breast cancer, reducing the social stigma surrounding breast cancer, increasing funding for medical research on the disease, and promoting breast cancer screening, the trajectory of breast cancer advocacy over the past 40 years in the US has been and continues to be complex and multifaceted.

In this chapter, I discuss the breast cancer advocacy landscape in the US, focusing on the challenges that environmental breast cancer advocates have posed, both to mainstream biomedical breast cancer advocacy and to the current limited biomedical approach to breast cancer research. I propose that the environmental breast cancer movement in the US is successfully challenging the deeply entrenched individual and genetic focused biomedical approach to breast cancer by advocating for and engaging in federally-funded environmental breast cancer research projects, developing “a lab of their own” and conducting their own research into environmental causes of breast cancer, and critiquing the call for “proof of harm” itself and advocating for the precautionary principle. Nevertheless, the environmental breast cancer movement faces challenges in demonstrating and remedying the environmental links to breast cancer, which will be discussed throughout this chapter.

The landscape of US breast cancer advocacy

Biomedical screening and early detection advocacy is the most prominent form of breast cancer advocacy in the US. Biomedical breast cancer advocates focus on the problem of lack of awareness and access to screening for breast cancer. They promote early detection and often fundraise to contribute to medical research on breast cancer in the name of finding a cure. Komen for the Cure, founded in 1982 by the younger sister of Susan G. Komen, who had died from breast cancer two years before, and today the largest and most financially successful breast cancer organization in the US, is largely associated with this approach to breast cancer advocacy. Given the biomedical focus of this type of advocacy, these advocates generally have a positive view of the medical establishment overall, seeing them as allies in the quest to conquer breast cancer. Many of the organizations associated with this approach to breast cancer advocacy have elite and often professional origins, often having been initiated by corporations (e.g. Avon, Estée Lauder) and celebrity or wealthy families who formed organizations after losing a member of their family to breast cancer (e.g. Komen for the Cure). Drawing on the rhetoric of the 1970s women’s health movement, these organizations in practice often function more as philanthropic charities, but have self-identified as social movements (King 2006; Klawiter 2008). They do not challenge the biomedical model of addressing breast cancer, but rather engage with medical research by raising money that can be funneled into breast cancer research, which typically focuses on genes, individual risk factors (e.g., body fat, diet, exercise, alcohol consumption), and pharmacological treatments. Representatives from these organizations often have a seat at the table on government panels for cancer research, but they do not usually challenge the status quo with regard to research priorities. Rather, they seek to increase the funding for biomedical breast cancer research.

In stark contrast to biomedical breast cancer advocacy, environmental and cancer prevention activist organizations (e.g. Breast Cancer Action, Massachusetts Breast Cancer Coalition, Breast Cancer Fund, Zero Breast Cancer), which first emerged in the early 1990s have grassroots origins, often developing in communities where cancer clusters appear to exist, predominantly in Cape Cod, Massachusetts, Long Island, New York, and the San Francisco Bay Area in California. Rather than working toward gaining greater access to biomedical screening and treatment in its current state, they advocate a new inclusive scientific paradigm. The environmental breast cancer movement can be understood as an “embodied health movement,” in which activists address “disease, disability or illness experience by challenging science on etiology, diagnosis, treatment and/or prevention” (Brown and Zavestoski 2005: 7). Environmental breast cancer activists take a critical stance toward science and medical professionals. They have sought to strategically partner with scientists to investigate the increased cancer incidence rates in their communities. These activists and the organizations that they have developed draw on the feminist tradition of health activism and AIDS activism, and also have strong connections to environmental health and justice movements (Klawiter 2008).

The development of environmental and prevention-oriented breast cancer activism is largely due to the fact that many women who were affected by breast cancer, particularly in communities where they noticed many other women being diagnosed with breast cancer, began to question the causes of the disease more deeply and began to see breast cancer as a “contested illness.” Contested illnesses are conditions that are “either unexplained by current medical knowledge or have purported environmental explanations that are often disputed by medical professionals and scientists” (Brown and Zavestoski 2005: 7). People concerned with these illnesses may collectively organize to achieve medical recognition, treatment, and/or increased medical research (Brown and Zavestoski 2005). In some cases where environmental factors are suspected, advocacy groups may strive to shift attention away from strictly medical explanations of the disease and call for research into environmental causes and prevention of the illness (Brody and Rudel 2003; Brody et al. 2005; Brown et al. 2006; Eisenstein 2001; Krimsky 2000; McCormick et al. 2004; Steingraber 2000).

Breast cancer is a contested illness due to the lack of a definitive explanation of its etiology. Because much medical research is focused on individual bodies at the cellular, hormonal and genetic levels, the context beyond this bodily level of understanding is often absent. Additionally, in the current “human genome era” the emphasis of biomedical research is primarily focused on genetic understandings of diseases (Rooser 2000). Despite the much celebrated discovery of the BRCA-1 and BRCA-2 gene mutations in the 1990s, genetic predispositions to breast cancer account for only about five to ten percent of all breast cancer cases (Klawiter 2002). These genetic mutations are not particularly prevalent in the population and cannot explain the majority of women who are diagnosed with breast cancer and do not have genetic mutations. “Medical researchers supplement this account of breast cancer causation, which fails to explain 90–95% of breast cancer cases, with a focus on ‘lifestyle factors’ (e.g., diet, exercise) to explain the rest of the occurrences” (Baralt 2010: 288). In particular, medical professionals tend to explain the increasing rates of breast cancer, particularly among women in industrialized countries, by citing changing reproductive behaviors (Aronowitz 2007). Delayed childbearing or lack of childbearing, birthing fewer children, not breastfeeding (or breastfeeding for only a short period of time), and using hormone replacement therapy all increase a woman’s lifetime exposure to estrogen, which is associated with increased breast cancer risk (Aronowitz 2007). Additionally, the increasing rate of breast cancer, particularly in (but not limited to) more developed countries, is often explained within the medical field as an artifact of improved medical detection and increased screening (Aronowitz 2007). This explanation alone, however, only accounts for between 25 and 40 percent of the increase. The rest of the increase remains unexplained (Brody 2010; McCormick 2010). Thus, in contrast to a disease like lung cancer, where a clear link has been drawn between smoking and lung cancer risk and only a limited number of cases remain unexplained, breast cancer remains an elusive disease despite much medical research.

To date, the large majority of breast cancer research has been on detection and treatment, even though a growing number of women with breast cancer and environmental breast cancer activists are concerned with causes of the disease and prevention. While research on breast cancer risk factors such as genetic mutations, childbearing history, body fat, alcohol consumption and sedentary lifestyle has been well-documented and publicized in an effort to reduce women’s risk of developing the disease, environmental breast cancer activists have been calling for more research into environmental factors that may be contributing to breast cancer risk. These activists focus on particular environmental links to breast cancer (Brown et al. 2006; Eisenstein 2001; Potts 2004; Steingraber 2000). This push for research into breast cancer and the environment has led to a fruitful area of research that is demonstrating the complexity of breast cancer causation and the role that various environmental factors play in contributing to breast cancer risk (Gray 2010).

Since the early 1990s, environmental breast cancer activists have engaged with medical researchers to shape the breast cancer research agenda. Their methods of engaging with scientific research have been varied. One approach has involved advocating for research into environmental links to breast cancer that would include some form of participatory research, meaning that the breast cancer activists themselves would be involved in the research process (see 26ff.). Based on the potential as well as the challenges of this approach, which will be discussed later, environmental breast cancer activists decided to take environmental breast cancer research into their own hands by creating “a lab of their own”, the Silent Spring Institute (Silent Spring Institute 2013a) (see 31ff.). Finally, also fueled by the frustration that environmental breast cancer activists have experienced regarding the standard of proof in traditional medical and epidemiological research, many environmental breast cancer activists are shaping medical research from the outside by 1) publicly challenging the biomedical narrative of medical progress toward finding a cure, 2) pushing medical researchers as well as other breast cancer advocacy organizations to demand research into environmental causes of breast cancer, and 3) calling for corporate accountability and governmental regulation based on the existing scientific knowledge on environmental links to breast cancer (see 34ff.).

A seat at the table: advocating for and collaborating on federally-funded breast cancer research projects

As stated previously, environmental breast cancer activism emerged in areas of the US where women who had breast cancer noticed that women around them were increasingly being diagnosed with the same disease. In the wake of environmental disasters such as Love Canal and the publication of Rachel Carson’s groundbreaking Silent Spring, many of these women began questioning whether there was something in their environment that was contributing to the seemingly high levels of breast cancer cases. Early engagement with research often involved breast cancer mapping projects that activists conducted themselves by going door-to-door to find out where women who were being diagnosed with breast cancer were living. They were looking for patterns in the geography of breast cancer diagnoses to begin to better understand what was happening in their communities. Environmental breast cancer activists began these mapping projects in the San Francisco Bay Area in California, which was reported in the early 1990s to have the highest incidence rate of breast cancer in the world (Zero Breast Cancer 2013) as well as Long Island, New York, and Cape Cod, Massachusetts. All of these regions had breast cancer incidence rates that were higher than the national average (McCormick et al. 2003; McCormick et al. 2004).

The Long Island breast cancer research study project

In all three of these geographic locations of what are now commonly referred to as “cancer clusters”, environmental breast cancer activists began working to shape and engage in research into environmental causes of breast cancer. Breast cancer activists sought public funding for environmental breast cancer research. In Long Island, local breast cancer organizations joined together to form the Long Island Breast Cancer Network (Kabat 2008; National Cancer Institute 2002). The organization consisted of women who were politically savvy and well-educated about breast cancer. They worked to form the National Breast Cancer Coalition to advocate for increased funding for breast cancer research in Congress. These environmental breast cancer activists lobbied Congressional Representatives in the early 1990s and in 1993 Congress passed Public Law 103–43 (Kabat 2008). The law, entitled “Study of Elevated Breast Cancer Rates in Long Island”, would become the first federally funded study of potential environmental causes of breast cancer (National Cancer Institute 2013). The law called on the head of the National Cancer Institute (NCI) in collaboration with the head of the National Institute of Environmental Health Sciences (NIEHS) to conduct research in two of the counties in Long Island that were of particular concern to activists. The law specified the location of the study, the methodology of the study, and certain elements of the study, such as the use of a geographic information system to evaluate current and past exposures of individuals to certain contaminants (National Cancer Institute 2013). Although the law was generated by activist support, the research grants themselves were awarded to academic scientists, who had some discretion regarding the specific chemicals that would be investigated. Some activists felt left out of this part of the process and many were dissatisfied with the researchers’ choice to focus on organochlorine compounds (e.g., DDT, DDE, chlordane) (Brody et al. 2005; McCormick et al. 2003). There were many chemicals of concern that activists wanted to have included in the study, which were not included. Furthermore, activists wanted a study that could potentially produce actionable results, meaning recommendations regarding chemical regulation and exposure reduction. The organochlorine compounds chosen by the researchers were already banned from use, so the findings would not be directly actionable (Brody et al. 2005).

Although environmental breast cancer activists succeeded politically in demonstrating the importance of environmental breast cancer research, which led to the development of this $31 million federally funded research project, the end results were mixed for activists. Before the long-awaited results of the study were published in 2002, activists already felt discontented with the study. Their participation was not clearly outlined in the research mandate and many felt that the researchers pursued their own agendas and did not take their priorities or concerns into consideration (McCormick et al. 2003). The study found no association between blood serum levels of DDE, chlordane, or dieldrin measured near the time of diagnosis with breast cancer (Gammond et al. 2002). Environmental breast cancer activists felt disillusioned by the results and by the process that led to them (Brody et al. 2005; McCormick et al. 2003).

This early collaboration between environmental breast cancer activists and medical researchers highlighted some of the challenges that these activists continue to face in their attempts to sh...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Notes on contributors
• Acknowledgements
• Patient associations, health social movements and the public shaping of biomedical research: an introduction
• PART I Empirical cases and theoretical perspectives
• PART II Shifting contexts and new challenges
• PART III Democratizing biomedicine? The role of patient associations and health social movements
• Index