The incidence of breast cancer has increased dramatically; in the UK, the lifetime risk is now one in nine women. Some scientists argue that breast cancer may be increasingly common because of the increased exposure to a number of environmental chemicals. This claim has been taken up by campaigners in the US and the UK, urging better health protection by governments. Most health policy, however, reflects the mainstream scientific view that there is insufficient evidence of environmental risks being related to breast cancer.
The aim of this project was to create opportunities for stakeholders to engage as equal participants in debate on this controversial issue, including health professionals, policy makers, ‘lay’ people (including women with breast cancer), and members of health and environmental NGOs. We aimed to examine the fences and defences that act as barriers to participation in this kind of debate, and better understand what kind of evidence these different communities of interest find convincing about the causes of breast cancer.
We had three objectives:
1. ‘To examine the differential understandings of environmental risks among a range of stakeholders…’
2. ‘…to test whether deliberately staging interventions in which dialogue between communities of interest are facilitated can establish more consensual and trusting relations...’
3. ‘To investigate citizen participation in policy planning regarding hazard reduction …[and] comparable initiatives in the USA…to gain better understanding of how communities of expertise effectively participate in risk governance.’
Activities
We set up a number of interviews, focus groups and discussions with key people with an active interest in the issue, and we attended meetings of groups and organisations whose work included consideration of possible links between environmental hazards and breast cancer.
We organised three local hearings to bring together a range of different people, as we had hoped, although those from the medical profession and research science, were under-represented, while those sympathetic to environmental risk hypotheses tended to be over-represented. We invited participants to air their own views, and to hear the views of others.
We used a range of methods to generate discussion; most notably, participants drew on maps we provided of the locality, showing where there were hazards that they were concerned about. This method, Geographical Information Systems for Participation (GIS-P) has been used effectively by members of the research team in the context of other contentious local environmental issues. The maps were later digitised and returned to participants for their reference and any further comments. We also collated data on local incidence from government agencies.
We then held a national hearing in the House of Commons; representation at this meeting was diverse and in addition to the public health practitioners, advocacy groups, activists, environmental NGOs, ‘dissident scientists’, women with experience of breast cancer, and health professionals who were represented in the local hearings, epidemiologists, research scientists, and a politician were also present. A notable epidemiologist and the director of a breast cancer advocacy organisation joined the discussion by video link from the USA. A briefing paper was prepared for all participants, and the structured discussion was steered around this. A summary report of the national hearing was sent to all those invited.
All the hearings, as well as the initial interviews and discussions, were tape recorded and then transcribed (the national hearing was also video taped); we then analysed that data, took notes and met to discuss what we had learned. The team has a wide range of interest and expertise, in health, social policy, geography and sociology, which we applied in making sense of what we heard. Great care is taken to preserve confidentiality in how we present our research findings.
We also undertook a series of literature reviews on participatory processes, social movements, risk and policy-making. While the UK government has been keen to engage lay people in debate about genetics, GM crops and mobile phone masts, it is less enthusiastic about debate over issues, like this one, where the research is regarded as equivocal. We maintained contact with people working in the breast cancer/environment movement in the US, and with scientists and social researchers working there.
Our findings show that there are competing views on every aspect of this issue: while most agreed that explanation of the rising incidence of breast cancer, and its complex origins, is required, there was not consensus on even this. Opinion was also divided about whether the science of epidemiology was able to provide answers, and whether governments should act on the basis of a precautionary approach. We conclude that these differing understanding of risk are shaped by stakeholders’ ideological standpoints: the ideas and concepts they use to make sense of society and their role in it. We have also begun to analyse our findings in terms of the positions that the communities of interest hold in relation to the nature of knowledge. These positions determine what research questions can and should be asked, what methods are appropriate, what kind of evidence is acceptable, and how that should inform government action and policy-making.
In relation to both these frames of analysis, the epistemological (regarding knowledge) and the ideological, we find that alliances between participants is not, as is often assumed, along professional/lay lines, nor along lines of particular expertise. This has important implications, for better understanding of citizen participation in decision making, the role of social movements, ‘lay’ expertise and popular epidemiology.
In terms of dissemination and impacts of the project, we have taken part in a number of meetings and conferences to talk about this work and broaden debate of the issue. UKPHA is launching a Special Interest Group on The Health Impacts of Environmental Pollutants and Chemicals. Potts is convening an international round table discussion on strategic approaches to environmental risk at the Fourth World Conference on Breast Cancer in Canada in June 2005. We have published articles on this project in both academic and professional health journals, and plan several more. Throughout the project we have maintained close contact with the non-academic community concerned with the issue we have researched.