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Health social movements (HSMs) are an important political force concerning health access and quality of care, as well as for broader social change. We define HSMs as collective challenges to medical policy, public health policy and politics, belief systems, research and practice which include an array of formal and informal organisations, supporters, networks of co-operation and media. HSMs make many challenges to political power, professional authority and personal and collective identity. These movements address (a) access to, or provision of, health-care services; (b) disease, illness experience, disability and contested illness; and (c) health inequality and inequity based on race, ethnicity, gender, class and/or sexuality.

This introductory essay has three goals. First, we aim to explain why an entire volume on health social movements is warranted, by specifying the important analytical questions to be answered and by situating the volume in the midst of a growing interest in the topic among scholars from various sociological fields and even other disciplines. Second, we seek to offer an explanation for the phenomenon of health social movements generally, and more specifically what appears to be a recent growth in their presence and power in contemporary societies. We do this by noting the growing tendency across all movements to challenge authority structures, and by emphasising the ways in which HSMs challenge the authority of medicine, science, governments and corporations. Third, we further develop the concept of health social movements, and offer some conceptual tools that may be of use in reading the contributions to the volume, which we introduce in a manner that offers insight into the ways in which they advance our understanding of HSMs.

Why and whence the focus on HSMs?

  1. Top of page
  2. Why and whence the focus on HSMs?
  3. What explains the emergence of HSMs and their challenges to authority structures?
  4. HSMs: connecting health to socioeconomic, political and institutional concerns
  5. What conceptual tools can be applied to the study of HSMs?
  6. Key issues in health social movements addressed by this volume
  7. Conclusion
  8. Acknowledgments
  9. References

In the last SHI Monograph, Health and Media, Clive Seale (2003) introduced the volume by pointing to the fact that media studies and the sociology of health and illness ‘stand at a distance from one another’. Seale used the Monograph as a vehicle to bridge that gap. The same holds true for health social movements: many medical sociologists have studied such movements without reference to social movement theory and literature, while social movement specialists rarely take up issues of health.

Fortunately, we are seeing recent attention to health social movements that has the potential to reduce this gap. The Society for Social Studies of Science, in both the 2001 and 2003 annual meetings, had a stream of four sessions on the topic. Stemming from that 2003 stream, a special issue of Science as Culture on health, the environment, and social movements is now in press, edited by David Hess. The current volume editors were invited to lead a multi-session workshop at the American Sociological Association's Collective Behavior and Social Movements Section Conference in August 2002. A medical social movements symposium was held in Sweden in June 2003, with a resultant special issue of Social Science and Medicine on patient-centred movements, edited by Joe Dumit, published in 2004. A special issue on health and the environment of Annals of the American Academy of Political and Social Science, in November 2002, focused on the role of health social movements.

Sociology of Health and Illness has published a significant amount of research on health social movements, and it is fitting that this volume reflects this tradition. In our recent article in this journal, Embodied health movements: uncharted territory in social movement research (Brown et al. 2004), we put forth our first attempt to systematise the study of these movements. Previous research has focused on individual cases of health social movements; we consider them as a collective group that when taken together have been an important force for social change. Scholars writing about individual social movements dealing with health have covered areas such as occupational safety and health (Rosner and Markowitz 1987), the women's health movement (Morgen 2002), AIDS activism (Epstein 1996) and environmental justice organizing (Bullard 1994). Other scholars, who focus more generally on changes in the health care system, point to the significance of these movements in medical history (Porter 1997) and health policy (Light 2000). Despite this significant body of research, scholars have not examined the forces that gave rise to the wide array of health social movements, nor carried out comparative analysis of these movements’ different strategic, tactical and political approaches. Generally, scholars have not explored the collective development and impact the myriad health social movements have had on public health, medical research and health-care delivery. We believe there is an analytical benefit to considering the origins and impacts of HSMs collectively, and this work is part of a larger project to integrate and synthesise this material.

What explains the emergence of HSMs and their challenges to authority structures?

  1. Top of page
  2. Why and whence the focus on HSMs?
  3. What explains the emergence of HSMs and their challenges to authority structures?
  4. HSMs: connecting health to socioeconomic, political and institutional concerns
  5. What conceptual tools can be applied to the study of HSMs?
  6. Key issues in health social movements addressed by this volume
  7. Conclusion
  8. Acknowledgments
  9. References

The scientization of decision-making

Why has this new class of health social movements emerged in the last decade? A central reason is that science and technocratic decision-making have become an increasingly dominant force in shaping social policy and regulation. Governmental and scientific demands for ‘better science’ in policy-making have become a significant and powerful authority used to support dominant political and socioeconomic systems. Through this ‘scient-ization’ (Morello-Frosch et al. forthcoming) of decision-making, industry exerts considerable control over debates regarding the costs, benefits and potential risks of new technologies and industrial production by deploying scientific experts who work to ensure that battles over policy-making remain scientific, ‘objective’ and effectively separated from the social milieu in which they unfold (Beck 1992). The end result of this process is threefold: First, scientists are asked to answer questions that are virtually impossible to answer scientifically due to data uncertainties or the infeasibility of carrying out a study. Second, the process inappropriately frames political and moral questions (i.e.‘transcientific’ issues) in scientific terms, thus limiting public participation in decision-making and ensuring that it becomes the purview of ‘experts’ (Weinberg 1972). Third, the scientisation of decision-making delegitimises the importance of those questions that may not be conducive to scientific analysis. All of these processes can exclude the public from important policy debates and diminish public capacity to participate in the production of scientific knowledge itself.

The continuing advance of societal rationalisation raises the role of objective scientific expertise above that of public knowledge for most social issues. Ironically, however, the quest for better science to inform good decision-making is often a veiled attempt to hide the politicisation of the policy process (Weiss 2004). This has been recently demonstrated in the United States by the persistent opposition of the Bush Administration to the widening scientific consensus on the question of global climate change and its attendant ecological and human health impacts (Gelbspan 1997). The Bush Administration has extended such antiscientific actions to a wide range of issues that go against consensus held by scientists, and that purge responsible scientists from expert panels and replace them with industry supporters: revoking major elements of the Clean Air Act's regulatory regime1, allowing high mercury emissions from power plants, allowing lead industry representatives on Centers for Disease Control panels to stall lead regulation, firing pro-regulatory officials who seek to enforce existing policies (Union of Concerned Scientists 2004). The extent of such actions is so great that 60 Nobel Laureates signed a protest letter in February 2004.

In their efforts to counter this trend, health social movements have leveraged medical science and public health to marshal resources, conduct research, and produce their own scientific knowledge. Until recently, most health social movements have focused on expanding access to health care and improving the quality of health care. The latest emerging crop of HSMs, what we term embodied health movements (EHMs are discussed in greater detail below), are highly focused on the personal understanding and experience of illness, while often addressing some of the access concerns from earlier movements. EHMs have some notably different goals, strategies and targets from other health social movements. By using science to democratise knowledge production, embodied health movements can engage in effective policy advocacy and challenge aspects of the political economy, as well as transform traditional assumptions and lines of inquiry regarding disease causation and strategies for prevention. This emergence of EHMs has been catalysed by: growing public awareness about the limits of medical science to solve persistent health problems that are socially and economically mediated; the rise of bioethical issues and dilemmas of scientific knowledge production; and ultimately the collective drive to enhance democratic participation in social policy and regulation.

The rise of medical authority

The rise of medical authority is one of the most prominent features of modern society, involving laws and regulations concerning how professionals are empowered to make health decisions and to provide care, determination of and application of the knowledge base for medicine, and the power of medical authorities to deal with a variety of social problems that may not be primarily medical. Medical authority is tied into the broader trend we discussed above – the rise and solidification of scientific authority, in which science plays an increasing role in determining and evaluating social priorities. Medical authority has always involved varying alliances between health professionals, state agencies, corporate actors, scientists and citizen-activists. As in any dialectic relationship, increasing medical authority has occurred alongside increasing challenges to this authority. HSMs represent the transformation of sporadic and relatively unorganised challenges into formal and institutionalised opposition. In challenging scientific and medical authority structures, HSMs focus on the frequent medicalization of social problems, increasing scientization in which technical solutions are provided instead of social solutions, and a burgeoning corporatisation that takes many decisions out of people's hands, including what would be considered appropriate care.

Many scholars view authority structures as an aspect of state power, with actual or potential repressive authority. But in our modern scientized world, science and medicine have become increasingly powerful sources of authority that play a central role in supporting dominant political and socioeconomic systems. Concepts such as ‘medical social control’ (Zola 1972) and the ‘medicalization of society’ (Conrad 1992) have demonstrated how health belief systems and the practices of the health care system support and maintain existing class, race and gender inequalities. Further, the economic power of the health care system provides a key element of the modern political economy. As such, medical science has become a double-edged sword: HSMs often depend on its expertise and authority, while simultaneously challenging its social, cultural and economic dominance.

Their paradoxical relationship with medical science requires that HSMs manage their use of medical science in a way that avoids delegitimising their critique of its coercive and corruptive power. On the one hand, HSMs attempt to capitalise on the positive authority of medical science, and its perception as an agent of progress and benevolence. On the other hand, HSMs struggle to reveal the manner in which science and medicine are used as instruments of coercion. For example, in military medicine (Daniels 1969) and corporate medicine (Walsh 1987), health professionals ostensibly serving their patients’ interests are in actuality servicing their institutions’ needs, frequently going against the patients’ interests. For example, corporate physicians in the asbestos industry hid from workers the information that they had mesothelioma caused by asbestos (Brodeur 1985). Growing awareness of biomedical abuses of authority have contributed to much distrust, as the public has learned of such phenomena as the Tuskegee syphilis experiment2, the long history of radiation experiments and deliberate releases, the discriminatory testing of contraceptives on women in Puerto Rico, and the export to other countries of toxic substances banned in the US. At present, there is much attention to research fraud, conflict of interest in medical research and corporate influence in universities (Krimsky 2003).

In the face of such realisations, the highly-valued institutions of science and medicine come under sharper scrutiny, and social movements have mobilised powerful responses. Further, because these new realisations extend beyond the narrow boundaries of science and medicine, to include the political economy and dominant cultural values and institutions, health social movement challenges take on a very broad social critique. Even without the pressure of egregious violations, health movements propel wide-scale critiques. For example, the women's health movement pointed to sexism in so many ordinary realms of medicine that it was easy for women's health activism to forge a deep critique of patriarchy.

The public can more readily challenge science because it now has a multitude of ways to acquire and share scientific information for personal use and to promote policy change. People obtain extensive knowledge through increased interpersonal sharing of health concerns in self-help and support groups. Information is also obtained through major dissemination of scientific knowledge by the media (primarily print), and by wide access through the Internet to medical databases, research studies and regular news coverage of the challenges of research in the world of medical science. Nevertheless, the public has become more aware of the limitations of modern medical science to effectively address the persistent and most challenging health issues of the day; indeed, medical technology advances also go hand-in-hand with an increased risk of medical errors, microbial resistance to drug treatments, as well as iatrogenic complications that can lead to adverse health outcomes (Garrett 1994). Not surprisingly, this has led to the increased popularity of combining traditional medical treatments with alternative medicine (e.g. acupuncture, meditation and body work). Hence, the public's overall faith in medical science is moderated by the use of other avenues to disease treatment and health.

Public health research constantly reminds us that advances in modern medicine have not by themselves made the largest difference in improving the health status of diverse populations (McKeown 1976). Biomedical research, emphasising how individual risk factors predict diseases, receives the lion's share of regulatory attention, despite a significant body of research demonstrating that the health status of populations is largely determined by structural features such as race, class, income distribution, geography and other environmental factors (Krieger et al. 1993, Berkman and Kawachi 2000). This is exemplified by the increased prevalence of chronic diseases that are now impacting on new population groups (e.g. diabetes and obesity in children) and the resurgence of infectious diseases that the public and medical authorities had previously assumed had been eradicated or at least brought under control.

Finally, debates on ethical questions involving medical science have captured public attention. The advent of genetic testing for a variety of diseases has raised valid concern about the use of that information by employers to discriminate in the workplace and justify the exclusion of certain workers from insurance coverage (Shulte and Sweeny 1995, Shulte et al. 1997). Ethical concerns have been further fuelled by revelations of conflict of interest in the support of research by pharmaceutical firms, and the increasing power of private corporations to direct university research (Krimsky 2003). Public confidence in the integrity of scientific research has been challenged by revelations of corporations and federal agencies that violate the peer-review process or suppress the dissemination of research results that conflict with corporate economic interests (Ong and Glantz 2001, Rosenstock and Lee 2002, Greer and Steinzor 2002).

In addition, a spate of recent, highly publicised adverse events in human biomedical research has generated concerns about the ethical implications of using human subjects as research volunteers and has implicated the institutional culture at several prestigious research institutions for failing to protect study participants adequately. The 1999 death of an 18-year-old patient in a gene therapy trial at the University of Pennsylvania and the 2001 death of a healthy 24-year-old volunteer in an asthma study at Johns Hopkins University are the two cases that have received the greatest level of attention in the United States (Steinbrook 2002). In the Hopkins case, one of the criticisms levelled at the investigator and the university charged that because the volunteer was an employee in the laboratory conducting the experiment, she may have been subtly and inappropriately pressured by her employer or by her colleagues to participate in the experiment (Boston Globe 2001). These ethical concerns highlight how easily the thin veil of objectivity in medical research can be breached, despite the cardinal claim that science is essentially an objective endeavour. For the public, these problems highlight the polemical intersection of science, society and institutional culture, which ultimately paves the way for a critique of the dominant political economy and its adverse effect on the public's health.

HSMs: connecting health to socioeconomic, political and institutional concerns

  1. Top of page
  2. Why and whence the focus on HSMs?
  3. What explains the emergence of HSMs and their challenges to authority structures?
  4. HSMs: connecting health to socioeconomic, political and institutional concerns
  5. What conceptual tools can be applied to the study of HSMs?
  6. Key issues in health social movements addressed by this volume
  7. Conclusion
  8. Acknowledgments
  9. References

Because health concerns are so pervasive throughout society, people are more likely to focus many grievances through a lens of health. For example, during an economic recession and periods of high unemployment, it is understandable that people will make demands for broader and better health insurance and for expansion of coverage to include the uninsured. Similarly, in an industrial society where environmental degradation is increasingly visible and in which the government has begun to roll back decades of environmental regulation and protection, it becomes clearer for the public to connect health with socioeconomic, political and institutional concerns and begin pushing for increased regulation of industrial production and enhanced community participation in the formation of environmental policy.

Some of this struggle for democratisation is due to social trends that provide a medium for the growth of health social movements; some of it is due to the achievements of health social movements themselves. The key is that increasing numbers of people presently believe they have the right and the authority to influence health policy, including access issues, quality of care, clinical interaction and federal funding of research. While some of that pressure occurs at the individual level, the most effective forms originate from the collective efforts of health social movements.

What conceptual tools can be applied to the study of HSMs?

  1. Top of page
  2. Why and whence the focus on HSMs?
  3. What explains the emergence of HSMs and their challenges to authority structures?
  4. HSMs: connecting health to socioeconomic, political and institutional concerns
  5. What conceptual tools can be applied to the study of HSMs?
  6. Key issues in health social movements addressed by this volume
  7. Conclusion
  8. Acknowledgments
  9. References

When we began our exploration of HSMs a few years ago, we developed a preliminary typology that represents ideal types of HSMs, even though we understand that the goals and activities of some movements may fit into more than one of these categories. The model (Brown et al. 2004) aims to begin the process of analytically exploring a wide range of movements that deal with health rather than providing a rigid set of categories.

Health access movements seek equitable access to health care and improved provision of health care services. These include movements such as those seeking national health care reform, increased ability to pick specialists and extension of health insurance to uninsured people.

Embodied health movements address disease, disability or illness experience by challenging science on aetiology, diagnosis, treatment and prevention. Embodied health movements include ‘contested illnesses’ that are either unexplained by current medical knowledge or have environmental explanations that are often disputed. As a result, these groups organise to achieve medical recognition, treatment and/or research. Additionally, some established embodied health movements might include constituents who are not ill, but who perceive themselves as vulnerable to the disease; many breast cancer activists fit this characterisation, in joining other women who do have the disease. In addition to the breast cancer movement, this EHM category includes the AIDS movement, and the tobacco control movement.

Constituency-based health movements address health inequality and health inequity based on race, ethnicity, gender, class and/or sexuality differences. These groups address disproportionate outcomes and oversight by the scientific community and/or weak science. They include the women's health movement, gay and lesbian health movement and environmental justice movement.

The categories of our typology are ideal types. There is often overlap with other categories. For example, the women's health movement can be seen as a constituency-based movement, but at the same time it contains elements of both access movements (e.g. in seeking more services for women) and embodied movements (e.g. in challenging assumptions about psychiatric diagnoses for premenstrual symptoms). We view this typology as simply one route into studying a new area, and we believe there are other possible typologies that can provide the same push. Indeed, one of the articles in this volume, by Judith Allsop, Kathryn Jones and Rob Baggott, proposes a useful alternative model with the following types of HSMs: ‘condition-based groups’ that focus on specific conditions; ‘population-based groups’ concerned with all patients, carers or a specific population sub-group, such as children or ethnic minorities across a range of conditions; and ‘formal alliance organisations’ made up of other autonomous groups but linked by a shared interest such as genetics or long-term illness. As we work with such typologies, we are able to see what social factors are able to come into play and how well they can explain the development and outcomes of HSMs.

In focusing on the development of HSMs, the typology points to important questions about the similarities and differences in the ways the different types of HSMs develop. Our work on embodied health movements borrows concepts from social movements and science and technology studies scholars to elaborate on the mechanisms that shape the development of EHMs. For example, many health social movements have achieved the political victories described above by forging strategic connections between health and other social sectors (such as the environment). These connections enable them to overturn ineffective policies and push for more stringent regulation of industrial production that moves from a pollution control to a pollution prevention framework (Morello-Frosch 2002). Such strategic linkages can be understood in terms of the concept of ‘social movement spillover’ (Meyer and Whittier 1994), which points to two ways a movement can influence subsequent movements: ‘by altering the political and cultural conditions it confronts in the external environment, and by changing the individuals, groups, and norms within the movement itself’ (Meyer and Whittier 1994: 279).

The environmental breast cancer movement illustrates such a process. Spillover from the women's health movement, AIDS activism, and the toxic waste and environmental movements was vital to the development of a politicised collective illness identity of women with breast cancer that has enhanced their legitimacy in the eyes of policy-makers, scientists and their own emerging constituency. Many early breast cancer activists drew from their experience in the women's movement to ask whether their disease (including how it was recognised and treated) was yet another symptom of the adverse health effects of gender inequality. Likewise, many women learned key lessons from the AIDS movement, in which activists demanded that drug companies expanded their clinical trials, increased ‘compassionate access’ to promising experimental protocols, and pushed for more government funding of AIDS research. This crucial lesson spilled over into the breast cancer movement, which won significant increases in funding for research, representation of activists on federal and state-level research review panels, as well as the power to influence priority-setting for future scientific initiatives.

The social movement spillover that benefits the development of EHMs points to another of their characteristics. In challenging the authority of science and medicine by working both inside and outside the boundaries of biomedicine, EHMs can be seen as ‘boundary movements’ (a concept derived from Star and Greisemer's [1989] concept of ‘boundary objects’ and Gieryn's [1983] notion of ‘boundary work’). In the scientized world of health care, EHMs learn to transcend traditional boundaries of social movements. They can move fluidly between lay and expert identities; for instance, raising money to fund their own research when the biomedical science research agenda does not make their cause a priority. Similarly, EHMs often rely on sympathetic scientists who, by collaborating with activists, begin to blur the boundary between actors inside and outside the scientific system. We have employed the concepts of social movement spillover and boundary movements in our analysis of embodied health movements. The typology of health social movements we introduced above begs the question of whether these conceptual tools for explaining the development and tactics of embodied health movements can be applied to the other types of HSMs in the typology.

A similar comparison across the types of HSMs, but in terms of the outcomes, would also be useful. There seem to be at least three main ways in which HSMs affect society. First, they produce changes in the health care and public health systems, both in terms of health care delivery, social policy and regulation. Second, they produce changes in medical science, through the promotion of innovative hypotheses, new methodological approaches to research and changes in funding priorities. Third, health social movements produce changes in civil society by pushing to democratise those institutions that shape medical research and policy-making (for examples of these three categories of HSMs, see Brown et al. 2004). Whether certain types of HSMs tend to be more or less successful in achieving one type of outcome but not others is worth further consideration.

Key issues in health social movements addressed by this volume

  1. Top of page
  2. Why and whence the focus on HSMs?
  3. What explains the emergence of HSMs and their challenges to authority structures?
  4. HSMs: connecting health to socioeconomic, political and institutional concerns
  5. What conceptual tools can be applied to the study of HSMs?
  6. Key issues in health social movements addressed by this volume
  7. Conclusion
  8. Acknowledgments
  9. References

Rather than use the typology to categorise and introduce the contributions to this volume, we point to further questions that might be answered through the research reported here.

Where do HSMs fit within the broader cultural trend of public involvement in science? In the first article, David Hess points out that HSMs, as well as the professions of complementary and alternative medicine, commonly challenge the authority of medical knowledge. Hess defines the medical profession's dismissal of such challenges as ‘paternalistic progressivism’. Paternalistic progressivism, he argues, has a counterpart in the claims by HSMs, and the public more broadly, that medicine is corrupted by materialistic philosophy and profitability concerns, specifically those of the pharmaceutical industry (what Hess calls ‘medical devolution’). These duelling forces are resolved in what Hess calls the ‘public shaping of science’, ‘in which there is both greater agency of social movement/lay advocacy organisations and greater recognition of the legitimacy of that agency’. Understanding the place of HSMs within the movement toward the public shaping of science, Hess argues, requires a theoretical synthesis of medical sociology and the sociology of science.

Melinda Goldner also addresses the challenges the complementary and alternative medicine movement make to the authority of medical knowledge. Unlike Hess, her focus is on the way that physicians and hospitals respond to these challenges. Like Hess, she attempts a theoretical integration of two different perspectives. In drawing on social movement and institutional theories, Goldner emphasises how health social movements can gain access to formal organisations whose boundaries are often more permeable than believed. Similarly, organisations have many ways of responding to social movement challenges. Just as Hess describes a malleable contemporary context for the negotiation of meaning in biomedical practice, Goldner describes how the outcomes of HSM activism constantly evolve depending on the negotiation between the challengers and the organisational actors.

Is there an organized ‘health social movement’? In the next article, Judith Allsop, Kathryn Jones and Rob Baggott point us to a significant task: surveying the landscape of HSMs in order to trace the historical trend of when groups were formed, how significant they are for the whole society, and whether they coalesce into a broader ‘health consumer movement’. This brings up the important distinction between social movements and social movement organisations, and leads us to think seriously about what it takes finally to determine that a larger movement exists. Allsop et al.'s article points to the emergence of a health consumer movement that crosses the lines of many different diseases and conditions. This health consumer movement is reflected in the networks and sharing of resources that exist among individual health consumer organisations.

Ganchoff's analysis of stem cell activism, which similarly points to interests held in common across a diverse set of social actors concerned with a number of different diseases and uses of stem cell research, suggests that we may need to conceive of HSMs much more broadly. Ganchoff draws on social movement theory and science and technology studies to develop the concept of a field of biotechnology. His development of this concept is significant in terms of its ability to focus analytical attention ‘on a field of relationships and conflicts’, which ‘deepens understandings of how “biomedicalization” is operating and transforming both biomedicine and the subjects that live and move within and across its uneven and stratified terrains’. Ganchoff's conceptualisation of a field of biotechnology points to the movement actors one would expect – disease groups who stand to benefit from potential breakthroughs in stem-cell research – while also allowing him to see economic and government interests as central actors in the movement. In the end, Ganchoff's analysis also asks us to think anew about the ways in which social, political and scientific actors participate in the construction of biomedical knowledge.

In the next article we once again see how health social movements often result in unexpected relationships. Carole Joffe, Tracy Weitz and Clare Stacey meticulously detail the on-again-off-again relationship between abortion activists and physicians. Most recently, the vocal anti-abortion movement in the United States has created an even tighter bond between these ‘uneasy allies’. Joffe et al. observe two tensions: one between activist doctors and a profession that may perceive them as ‘fanatics’, and another between committed, radical feminist activists and an increasingly professional movement. The role these tensions play in shaping the collaborations and strategies of the diverse actors in the abortion rights movement, they note, need to be studied further in related movements such as the medical marijuana and physician-assisted suicide movements.

How do full-fledged social movement organisations emerge from a hodgepodge of interest or support groups? To this point, the topics of the articles in the volume represent fairly obvious instances of social movements. The next article deals with two obstacles to the further development of a health social movement. From her observations of the Alzheimer's Association in the United States, Renée Beard concludes that ‘Despite the fact that encouraging more people with [Alzheimer's Disease] to speak publicly can benefit the Association's efforts, the incorporation of personal spokespersons for the AD movement suffers the same biomedical and caregiver biases as does so much of Alzheimer's research’. According to Beard, the Association's caregiver-focus and its commitment to working within the institution of biomedical research have kept it from more politicised activities. Beard's research points to important considerations for investigating other disease-based movements where the disease's pathology or the demographics of the population prevent those directly affected by the disease from representing the voice of the movement.

How do HSMs use cultural resources to achieve their goals? In contrast, Emily Kolker examines one of the most respected and successful health social movements, the breast cancer movement. But she asks a very interesting question of this movement, that can be extended to other health social movements: How do health social movements strategically use cultural resources to engage in funding activism? Her analysis points to the significance of the cultural meanings attached to disease sufferers. After all, prostate cancer activists will never be able to use the ‘gender equity’ or ‘family erosion’ claims employed by breast cancer activists as they attempted to mobilise funding for further research into breast cancer. As important, Kolker's research provides a useful contrast to the view that much health activism is about science. Though science will always be central to many HSMs’ efforts, all movements take place within a broader culture where the symbolic meanings attached to diseases and people hold great significance for marshalling scientific knowledge.

The volume concludes with Maren Klawiter's fascinating exploration of one woman's breast cancer history. Klawiter meticulously illustrates how the breast cancer movement has transformed the ‘regime of breast cancer’ so that ‘collective identities, emotional vocabularies, popular images, public policies, institutionalised practices, social scripts and authoritative discourses’ give women with breast cancer today a fundamentally changed experience from 20–30 years ago. Klawiter's work is significant in terms of sociological accounts of breast cancer in that where most previous work has emphasised the movement's politicisation of breast cancer, Klawiter actually demonstrates how this politicisation alters the very experience of breast cancer for one woman. Equally important, this work represents an important advance in the study of HSMs through its focus on the implications of macro-level social movement activism on the micro-level illness experience. Future researchers should take note of Klawiter's use of transformation-of-illness experience as a measure of social movement success.

Taken together, these articles begin to build a coherent body of evidence that HSMs are a legitimate social phenomenon while offering theoretical insight into the types of conceptual developments necessary for further analysis. The diversity of theoretical approaches must partly explain the great range of methods. At one extreme, Allsop and colleagues search for all known examples of health activism, and then use survey methods to gather information on the groups they located. At the other, Klawiter employs the illness narrative of one woman to explore the way in which the experience of breast cancer changed over time as a result of changes in the regime of breast cancer, involving changes in medicine, changes in the public visibility and mainstream awareness of breast cancer, the emergence of the breast cancer movement, and a specifically feminist politics of breast cancer. In the middle, Joffe and colleagues use archival materials, interviews and historical analysis to trace physicians’ involvement in abortion rights. Similar to Beard and Goldner, Ganchoff uses interviews with activists from four social movements, websites and written material. Kolker employs content analysis of Congressional testimony, media and other texts. Finally, Hess sticks primarily to the theoretical realm. Theoretically and methodologically, the research in this volume speaks clearly to the need for integrative, and even interdisciplinary, approaches to the study of multi-layered and complex health social movements.

Conclusion

  1. Top of page
  2. Why and whence the focus on HSMs?
  3. What explains the emergence of HSMs and their challenges to authority structures?
  4. HSMs: connecting health to socioeconomic, political and institutional concerns
  5. What conceptual tools can be applied to the study of HSMs?
  6. Key issues in health social movements addressed by this volume
  7. Conclusion
  8. Acknowledgments
  9. References

Studying health social movements offers insight into an innovative and powerful form of political action aimed at transforming the health care system, modifying people's experience of illness and addressing broader social determinants of health and disease of diverse communities. Health social movements challenge state, institutional and cultural authorities in order to enhance public participation in social policy and regulation, and to democratise the production and dissemination of scientific knowledge in medical science and public health research. In order to achieve their goals, HSMs deploy an array of strategies and are nimble in the way they shift arenas of struggle. The inter-sectoral nature of HSMs strengthens their capacity to impact on scientific and policy realms as they forge strategic alliances with movements targeting other sectors, such as the environmental movement. Finally, HSMs utilise a broad range of tactics: they engage in the legal realm, shape public health research, employ cultural resources such as popular gender norms, promote new approaches to medical science, employ creative media tactics to highlight the need for structural social change and true disease prevention and engage within the policy arena to enhance public power to monitor and regulate industrial production.

HSM activism in scientific knowledge production may also introduce potential contradictions. Although engaging in scientific endeavours is important, this process can also sap energy and staff time that might otherwise be directed toward political and community organising. Engaging in scientific activities may cause dissension among movement groups, especially if those working on collaborations with academic researchers begin to attain far more resources and institutional access than other groups. Thus, it is important to keep in mind that as activists begin to take science into their own hands, they must grapple directly with some of the same polemical issues and contradictions that they had previously criticised. For example, some health movement groups have major disagreements over whether to take corporate funding to support their work. This issue has been particularly controversial for the environmental breast cancer movement, where groups have debated whether to accept funding from major pharmaceutical firms. Some activists have argued that accepting such corporate funding can create a real or perceived conflict of interest and undermine the credibility of an organisation reliably to analyse and disseminate scientific information, especially data regarding clinical trials for new drug protocols. Other groups must address ethical quandaries, such as Native American groups that work with scientists to analyse the presence of persistent contaminants in human breast milk. In carrying out this research, activists have sought to develop informed consent procedures that address the needs of the community and not just individual community members, and they must negotiate appropriate ways to report individual and collective study results to the community (Schell and Tarbell 1998).

Despite these challenges, HSMs have successfully leveraged their embodied experience of illness and forged a new path for how social movements can effectively engage in scientific knowledge production. Thus, HSMs serve as a critical counter-authority aimed at democratising and reshaping social policy and regulation in a way that transforms the socioeconomic and political conditions that underlie distributions of health and disease among populations.

Acknowledgments

  1. Top of page
  2. Why and whence the focus on HSMs?
  3. What explains the emergence of HSMs and their challenges to authority structures?
  4. HSMs: connecting health to socioeconomic, political and institutional concerns
  5. What conceptual tools can be applied to the study of HSMs?
  6. Key issues in health social movements addressed by this volume
  7. Conclusion
  8. Acknowledgments
  9. References

Jon Gabe was very helpful. From the selection of articles to recruit from the preliminary abstracts, through the review and editing process, his input was thoughtful and creative. We thank the reviewers who gave us insightful analyses of the submissions, and provided detailed recommendations for authors. The contributors were very receptive to multiple rounds of revision and editing. Our collaborators in our Contested Illnesses research group have helped shape our interest in health social movements, and have engaged in countless conversations about these issues; we are grateful to the present members (Rebecca Gasior Altman, Sabrina McCormick, Brian Mayer, Rachel Morello-Frosch and Laura Senier) and former members (Meadow Linder, Theo Luebke, Joshua Mandelbaum and Pamela Webster).

Notes
  • 1

    The Clean Air Act, enacted into law in 1970, is one of the most central components of environmental protection in the United States. Its mandate for revision of standards every five years, based on new scientific data, has led to increasing regulation of air pollution, but the Bush Administration has sought to combat that process.

  • 2

    The Tuskegee Syphilis Experiment ran for 40 years, until 1972, and is the most infamous case of unethical research in the United States. Black men were left untreated for their syphilis so that researchers could observe their pathology. The outcry over this experiment led to major developments in informed consent and other research protections.

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  2. Why and whence the focus on HSMs?
  3. What explains the emergence of HSMs and their challenges to authority structures?
  4. HSMs: connecting health to socioeconomic, political and institutional concerns
  5. What conceptual tools can be applied to the study of HSMs?
  6. Key issues in health social movements addressed by this volume
  7. Conclusion
  8. Acknowledgments
  9. References
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