Rebecca Gasior Altman

“A Lab of Our Own” Environmental Causation of Breast Cancer and Challenges to the Dominant Epidemiological Paradigm

There are challenges to the dominant research paradigm in breast cancer science. In the United States, science and social activism create paradigmatic shifts. Using interviews, ethnographic observations, and an extensive review of the literature, we create a three-dimensional model to situate changes in scientific controversy concerning environmental causes of breast cancer. We identify three paradigm challenges posed by activists and some scientists: (1) to move debates about causation upstream to address causes; (2) to shift emphasis from individual to modifiable societal-level factors beyond an individual’s control; and (3) to allow direct lay involvement in research, which may raise new questions and change how questions are approached, the methods used, and the standards of proof. We use our model to examine controversies about doing scientific research, interpreting scientific results, and acting on science. Ultimately, we aim to understand what impedes construction of new methodologies and knowledge about environmental factors in human disease.

EMBODIED HEALTH MOVEMENTS AND CHALLENGES TO THE DOMINANT EPIDEMIOLOGICAL PARADIGM

Health social movements address several issues: (a) access to, or provision of, health care services; (b) disease, illness experience, disability and contested illness; and/or (c) health inequality and inequity based on race, ethnicity, gender, class and/or sexuality. These movements have challenged a variety of authority structures in society, resulting in massive changes in the health care system. While many other social movements challenge medical authority, a rapidly growing type of health social movement, “embodied health movements” (EHMs), challenge both medical and scientific authority. Embodied health movements do this in three ways: (1) they make the body central to social movements, especially with regard to the embodied experience of people with the disease; (2) they typically include challenges to existing medical/scientific knowledge and practice; and (3) they often involve activists collaborating with scientists and health professionals in pursuing treatment, prevention, research, and expanded funding. We present a conceptual framework for understanding embodied health movements as simultaneously challenging authority structures and allying with them, and offer the environmental breast cancer movement as an exemplar case.

Health Social Movements: Advancing Traditional Medical Sociology Concepts

Over the last decade, a growing number of social scientists have turned their attention to the study of activism around health issues. Health social movements (HSMs) have pressed the institution of medicine to change in dramatic ways, embracing new modes of healthcare delivery and organization. Health activists have also pushed medicine to evolve by connecting their health concerns to other substantive issues such as social and environmental justice, poverty, and occupational or environmentally induced diseases. HSMs therefore serve as an important bridge, connecting the institution of medicine to other social institutions. In similar fashion, the study of HSMs has motivated medical sociology to develop new tools and theoretical perspectives to understand these alterations in the medical landscape. Medical sociologists stand to learn a great deal about the institution of medicine by observing it as it comes into conflict with patients and activists around issues of health care delivery, science and policy, and regulatory action. This broad sweep of interests must be systematized, which is our project here.