Social movements organised around health-related issues have been studied for almost as long as they have existed, yet social movement theory has not yet been applied to these movements. Health social movements (HSMs) are centrally organised around health, and address: (a) access to or provision of health care services; (b) health inequality and inequity based on race, ethnicity, gender, class and/or sexuality; and/or (c) disease, illness experience, disability and contested illness. HSMs can be subdivided into three categories: health access movements seek equitable access to health care and improved provision of health care services; constituencybased health movements address health inequality and health inequity based on race, ethnicity, gender, class and/or sexuality differences; and embodied health movements (EHMs) address disease, disability or illness experience by challenging science on etiology, diagnosis, treatment and prevention. These groups address disproportionate outcomes and oversight by the scientific community and/or weak science. This article focuses on embodied health movements, primarily in the US. These are unique in three ways: 1) they introduce the biological body 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. This article employs various elements of social movement theory to offer an approach to understanding embodied health movements, and provides a capsule example of one such movement, the environmental breast cancer movement.

We report on interviews conducted with participants in a novel study about environmental chemicals in body fluids and household air and dust. Interviews reveal how personal and collective environmental history influence the interpretation of exposure data, and how participants fashion an emergent understanding of environmental health problems from the articulation of science and experience. To the illness experience literature, we contribute a framework for analyzing a new category of embodied narratives-"exposure experience"-that examines the mediating role of science. We update social scientific knowledge about social responses to toxic chemicals during a period in which science alters public understanding of chemical pollution. This article is among the first published accounts of participants' responses to learning personal exposure data, research identified as critical to environmental science and public health. Our findings raise the importance of reporting even uncertain science and underscore the value of a community-based reporting strategy.Science increasingly contributes to how people discover and understand environmental problems (Murphy 1997), both aside from and in addition to their embodied or direct experience. Biomonitoring science and personal exposure assessment, which measures environmental chemicals 1 in the human body and household air and dust, is one example where

BackgroundExposure assessment has shifted from pollutant monitoring in air, soil, and water toward personal exposure measurements and biomonitoring. This trend along with the paucity of health effect data for many of the pollutants studied raise ethical and scientific challenges for reporting results to study participants.MethodsWe interviewed 26 individuals involved in biomonitoring studies, including academic scientists, scientists from environmental advocacy organizations, IRB officials, and study participants; observed meetings where stakeholders discussed these issues; and reviewed the relevant literature to assess emerging ethical, scientific, and policy debates about personal exposure assessment and biomonitoring, including public demand for information on the human health effects of chemical body burdens.ResultsWe identify three frameworks for report-back in personal exposure studies: clinical ethics; community-based participatory research; and citizen science 'data judo.' The first approach emphasizes reporting results only when the health significance of exposures is known, while the latter two represent new communication strategies where study participants play a role in interpreting, disseminating, and leveraging results to promote community health. We identify five critical areas to consider in planning future biomonitoring studies.ConclusionPublic deliberation about communication in personal exposure assessment research suggests that new forms of community-based research ethics and participatory scientific practice are emerging.

The recent flood of research concerning pollutants in personal environmental and biological samples-blood, urine, breastmilk, household dust and air, umbilical cord blood, and other media-raises questions about whether and how to report results to individual study participants. Clinical medicine provides an expert-driven framework, whereas community-based participatory research emphasizes participants' right to know and the potential to inform action even when health effects are uncertain. Activist efforts offer other models. We consider ethical issues involved in the decision to report individual results in exposure studies and what information should be included. Our discussion is informed by our experience with 120 women in a study of 89 pollutants in homes and by interviews with other researchers and institutional review board staff.