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‘Breast Cancer on Long Island’: The Emergence of a New Object Through Mapping Practices

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Abstract

In late 1980s and early 1990s ‘breast cancer on Long Island’ emerged as a distinct object characterized by higher than average incidence rates that some speculated could be explained by environmental factors. The scientific community and its discourses have played an authoritative role in delimiting what is officially ‘known’ and ‘not known’ about this specific disease ontology. This article moves beyond an epistemological focus towards what Annemarie Mol calls a ‘praxiographical’ inquiry into the everyday practices that produce complex disease objects. We consider how multiple and multi-sited practices of mapping breast cancer on Long Island—by activists, scientists and the state—contributed to the emergence of this new object, and to its multiple and shifting enactments over time. We explore the tensions and power relations between the ‘lay’ public and scientific ‘experts’, and how these influenced mapping practices and produced ‘breast cancer on Long Island’ as a complex and ongoing politico-scientific event.

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  1. 1 The larger project is a digital video archive of interviews with people with breast cancer on Long Island, breast cancer activists, health practitioners who care for people with breast cancer, scientists studying breast cancer, and New York State and county public health officials and politicians, all of whom we take to be integral to the emergence of ‘breast cancer on Long Island’. Before we began the digital video archive, we felt we needed to first carry out a thorough review of news reports and scientific publications regarding the event of breast cancer on Long Island. This article is an analysis of just one of the prominent practices—mapping—that we have discerned from that review. We have not yet begun the formal interview process for the digital video archive.

  2. 2 Statistics on breast cancer incidence on Long Island are most often derived from the New York State Cancer Registry coordinated by the New York State Department of Health (NYSDH). The Registry contains all reports from doctors and hospitals of new cancer diagnoses as well as deaths. These data are then made into statistics for the various cancer types, and are presented in a series of publicly accessible tables, showing breast cancer rates for each five-year period from 1976 on (the most recent data goes up to 2002). Tables exist for all of New York State, just New York City, New York State excluding New York City, and each county in the State (including Suffolk and Nassau, the two Long Island counties). See NYSHD (2005a, 2005b), both available at www.health.state.ny.nysdoh/cancer/nyscr/vol3.html

  3. 3 Locating the precise point in time that practices of breast cancer on Long Island became ‘activist’ and ‘political’ is difficult. Organizations were mobilized in the early 1980s to provide support and information about breast cancer, and to raise awareness about early detection among women. It is likely that these forums provided a space for women to become critically conscious of the political and collective dimensions of the disease. However, the consensus on activist websites, and in news reports, is that ‘breast cancer activism’, as a category of practice separate and qualitatively different from existing support and educational activities, emerged during the late 1980s and early 1990s. From the beginning, as we will show in more detail below, this ‘breast cancer activism’ was conceived specifically in relation to issues of science and research. The emergence of activist groups was, according to activists and the media, primarily a response to a specific scientific inquiry into the problematic rate of breast cancer on the Island—the Long Island Breast Cancer Study (LIBCS), which was initiated by the State of New York in 1985. News articles covering the progress of the LIBCS between 1985 and 1990 (when it was first announced as ‘concluded’ by health officials) consistently cite incidence data from the New York State Cancer Registry, which indicated that, between 1978 and 1982, the incidence rate for breast cancer for Nassau County, the western part of the island, was 12 percent above the statewide rate and 7.5 percent above the nationwide rate, while the incidence rate for Suffolk County, the eastern part of the island, was just slightly higher than average. For early reports on breast cancer incidence on Long Island, see Baldwin (1985), Tusiani (1988) and Slatella (1988). The LIBCS was initiated by health scientists in government, without any public prodding to do so. The results of this study then catalyzed many new practices, and created significantly different motivations for organizing around breast cancer. For an account of emerging politicization in response to the LIBCS, see Swirsky (2005). Swirsky began writing about breast cancer on Long Island in 1985 for the Women's Record, and for 20 years has been a health and science features writer for the New York Times Long Island Section. The West Islip Breast Cancer Coalition (WIBCC), discussed below, calls her ‘our breast cancer historian on Long Island’.

  4. 4 In particular, Public Law 103-43 specified that scientists should do case-control studies into possible associations between breast cancer and specific environmental factors. By the time the studies were published, many scientists were already arguing that the case-control design of the original studies was a mistake, and that longitudinal studies would have provided better data.

  5. 5 Studies published in 2002 include Gammon et al. (2002a, 2002b, 2002c). Other studies were published in 2003, including O'Leary (2003) and Kabat (2003).

  6. 6 One of the reviewers of an earlier version of this article expressed discomfort with what s/he read as the ‘unproblematized’ way in which we refer to the LIBCSP studies as ‘failed studies’. We use this terminology because this is the terminology that both scientists and activists used in regard to these studies. However, we do indeed want to problematize this perception, though not by suggesting these studies didn't fail. Rather, we want to suggest, and even revalue, failure as a necessary and potentially creative component of both scientific and political practices. For a discussion of an ‘ethics of failure’ in relation to practices of medicine, see Diedrich (2007), especially the conclusion entitled ‘Toward an Ethics of Failure’.

  7. 7 John Law, one of Mol's main collaborators, is also one of the key theorists of actor-network theory. He describes actor-network theory as a ‘semiotics of materiality’, which understands all objects (not only linguistic entities) as always produced in relation to other objects (see Law, 1999: 4). Projects utilizing this theory explore the complexity of objects and how they come into being in relation to other objects. For work influenced by actor-network theory, see, for example, Law (2002) and Mol and Law (2002).

  8. 8 Although Mol acknowledges that she has used the term ‘performance’ in previous work, in The body multiple (2002), she distances herself from performativity studies that can be traced back to J.L. Austin's speech act theory. She seems concerned to expand her domain of analysis beyond practices that are solely or primarily linguistic.

  9. 9 There are other differences between AIDS activism and breast cancer activism. In an article entitled ‘The anguished politics of breast cancer’, and subtitled ‘Taking their cue from AIDS activists, a growing army of survivors press angrily for more money, more research—and more respect’, Susan Ferraro discusses some of the differences between the two movements. The women she interviews are portrayed as unlikely activists—an ‘odd sort of army’—who show surprising political savvy. In contrast to AIDS activists, they are, Ferraro maintains, ‘(so far) less confrontational’, though she does mention WHAM (Women's Health Action and Mobilization) member Matuschka, who ‘makes art of her mastectomy with poster-size, one-breasted self-portraits that force people to see what cancer does’ (1993: 27, 58). More often though, according to Ferraro, these unlikely activists opt for coalition-building strategies and lobbying to influence those in government or the medical profession whose support might be beneficial to breast cancer survivors.

  10. 10 According to Epstein, the difference in the domains of causation and treatment is between ‘a more insulated preserve of biomedicine’ and ‘a more public and ‘applied’ domain’ (1998: 337).

  11. 11 We thank the reviewer who pointed this out to us. S/he noted that the causation research that activists sought was ‘impure (and literally quite dirty) research, in so far as it includes collecting soil, dust, etc. samples from women's homes and living environments’.

  12. 12 Some reviewers found our use of the word ‘science’ to be problematically monolithic. There are of course many different sciences, and, as we show in this article, frequently scientists disagree with each other about what can and should be studied and how exactly to conduct studies. However, we sometimes use the term ‘science’ in the singular to demonstrate the way that ‘breast cancer on Long Island’ was most frequently framed, in media reports and in some scientists’ and activists’ accounts, as a story of science, and the incursion of activists into this domain.

  13. 13 We have conducted a thorough review of articles on breast cancer in both the New York Times and Newsday (Long Island's largest newspaper) between 1985 and 2005. Our goal was not to quantify the number of articles on ‘breast cancer on Long Island’, but to provide historical evidence of the object and its emergence and enactments. For media analysis on breast cancer coverage that does quantify this coverage, see Lantz and Booth (1998) and Brown et al. (2001).

  14. 14 See Note 3. The early LIBCS consisted of a series of six studies which found no links between breast cancer and the environment. However, neither did the LIBCS ‘disprove’ environmental links, except to rule them out in favor of lifestyle and demographic factors. Most activists wrote these studies off as an obvious effort by the State to privilege individual lifestyle and demographic risk factors over any environmental explanation. The LIBCS is often referred to as the ‘first’ Long Island Breast Cancer Study (followed by the Long Island Breast Cancer Study Project, or LIBSCP, which is the focus of our article). However, the two are not linked as scientific studies—indeed, the majority of publications on the LIBSCP do not even make reference to the LIBCS. While the LIBSCP was funded by Congress and the National Institutes of Health, the LIBCS was a New York State Department of Health initiative. The LIBCS relied heavily on interview and survey methods with women and review of historical records, whereas the recent LIBCSP involved blood sampling and lab analysis of body tissue, and environmental sampling and testing of things like soil and water.

    The following reports were published as a result of the LIBCS: NYSDH, SUNY at Stony Brook Department of Preventive Medicine, & Nassau County Department of Health (1988, 1990a, 1990b); NYSDH (1990, 1992); NYSDH, Bureau of Environmental and Occupational Epidemiology (1992).

  15. 15 Sara McLafferty, one of the Hunter College geographers who analyzed the WIBCC survey and map findings (Timander and McLafferty: 1998), would later write about the methodological tensions between feminist geography and GIS in terms of how research is designed, informed, carried out and represented, as well as who is given access to it in the longer term. She uses the West Islip mapping project as a case study of her theoretical and methodological discussion (2002). We discuss both of these articles in more detail below.

  16. 16 There is no mention anywhere of these activities being tape-recorded or transcribed or ‘formally’ analyzed. We believe this was an informal process, carried out along with, and perhaps facilitating and enriching, the process of mapping and surveying. This ‘qualitative data’ was incorporated into the activists’ everyday understandings and narratives of breast cancer on Long Island. These cultural memories of breast cancer and the environment on Long Island surface in many domains over the years, including in media interviews, political activities and demands for research, and in community consultations with scientists undertaking research on Long Island.

  17. 17 Undoubtedly they had many other theories, but these are the ones mentioned by McLafferty (2002: 264). Long Island activists presented a wealth of historical clues and environmental issues they wanted investigated through the later LIBCSP-GIS. They came to the GIS community consultation meeting equipped with knowledge that only their own, local research and discussions could have generated. These collective, community suspicions and memories of environmental events and sources of pollution were not accounted for in the GIS, because ‘valid’ historical records could not consistently back up the activists’ claims.

  18. 18 Timander and McLafferty explain that the spatial clustering methods they use take into account both known risk factors, including age, race, socio-economic status, age at first menarche, age at menopause, and age at first full-term pregnancy, and ‘migration bias by focusing on women who have lived at their current residence for 30 years or longer’ (1998: 1623–1624).

  19. 19 In Man-made breast cancers, Zillah Eisenstein makes a similar argument through her articulation of the uses of theory. In her analysis, she describes theory as a ‘way of seeing connectedness—of the breast to the rest of the body; of the body to the rest of its environments; of the historical process over time, which triggers cancer mutations, to the fluidity of borders between the breast and all else. Theory allows me to see beyond singularity and inevitability’ (2001: ix).

  20. 20 This report is available on the New York State Department of Health website: www.health.state.ny.us/nysdoh/ (accessed July 2005); see also www.health.state.ny.us/diseases/cancer/csii/ (accessed April 2007).

  21. 21 Notably, the LIBCSP-GIS has also been criticized for excluding activists from the design of the research, as well as for denying them access to the research results. The National Cancer Institute has restricted access to the LIBCSP-GIS to ‘experts’, who must apply to view the data. ‘Non-experts’ can only view the larger maps produced by the project and not the maps that refer to smaller geographic areas or specific addresses. In an article in Newsday in 2002, Ellen Heineman, the NCI epidemiologist overseeing the LIBCSP-GIS, was interviewed, and her comments illustrate the policy of exclusion, as well as the traditional territorialism of science in maintaining exclusive access to its own tools in order to produce knowledge according to its own rules: ‘We're going to give the public a glimpse of the inner workings of a GIS, but they won't get to access the tools or a lot of the data’ (in Fagin, 2002c). Journalist Dan Fagin adds, ‘She said that non-scientists who won't understand the limitations of the GIS might draw conclusions about links between cancer and pollution that aren't supported by science’, and quotes Heineman again, ‘We don't have the capacity to provide the training and give them the expertise they would need to use these tools’ (2002c). Ironically, the legitimate ‘experts’ seem not to want anything to do with these tools. Fagin's article also reports that between 2000 and 2005, not one ‘expert’ applied to the NCI for access to the LIBCSP-GIS data, despite the supposed detail of its data. Reasons for this may include the general delegitimation of the hypothesis that breast cancer on Long Island has environmental causes. It's possible that scientists do not think they will find any meaningful environmental connections, particularly in the wake of Gammon's study findings.

  22. 22 Thanks to Victoria Hesford for helping to clarify this point.

  23. 23 See for example, the websites for breast cancer organizations in South Fork (www.southforkbreast.com/), Babylon (www.babylonbreastcancer.org) and Brentwood/Bayshore (home.att.net/∼bbbcc/).

  24. 24 This is precisely the moment when an ethics of failure can offer a useful counter to a demand for certainty. Articulating an ethics of failure leads not to paralysis in the face of failure, but to the search for new methods and practices of science and politics (Diedrich, 2007: 148–150).

  25. 25 For further discussion of the precautionary principle and organizations that have designed their activism around it, see Davis et al. (1998) and Potts (2004). For Davis et al., the precautionary principle is a theory that offers a new temporality of disease. They call for longer-term studies, noting that, ‘[t]he process of cancer alters metabolism in ways that are not well understood. Given the complex and competing roles of xenohormones, only long-term prospective studies that cover two generations will be able to resolve the issue of the relative roles of prenatal, prepubescent, and subsequent exposures to harmful and beneficial xenohormones’ (1998: 527).

  26. 26 For other critiques of the ‘mainstream’ breast cancer movement, see Ehrenreich (2001) and King (2004).

  27. 27 See, for example, Ehrenreich (2001) and Eisenstein (2001). Audre Lorde referred to the cancer-industrial complex as ‘Cancer, Inc.’ in The cancer journals (1980).

  28. 28 We should also note that some of them, especially Barish, became active in New York State Republican Party politics.

  29. 29 ‘HBCAC's Mapping Project chosen to present at the ESRI International Conference’, at www.hbcac.org/ mapping.html (accessed July 2005).

  30. 30 This resonates with Kim Fortun's discussion in Advocacy after Bhopal on what she describes as her:

    … commitment … to understanding how advocates responding to the Bhopal disaster have anteriorized the future—through legal precedents and the structure of rehabilitation schemes, but also more subtly. By establishing what counts as adequate description, explanation, and social response in the wake of disaster. By establishing how the past should be encountered (2001: 7).

    In a long footnote, Fortun offers several theoretical formulations of the ‘future anterior’, beginning with Derrida and including Foucault, Canguilhem and Lacan. At the end of this note, she states, ‘The future anterior is where the future is worked out, now’ (2001: 361, n2).

  31. 31 ‘HBCAC's Mapping Project chosen to present at the ESRI International Conference’, at www.hbcac.org/ mapping.html (accessed July 2005), 29.

  32. 32 Ibid.

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Acknowledgements

The authors would like to thank Cindy Patton and the Global Science/Women's Health Project at Simon Fraser University for support for this project. We would also like to thank Victoria Hesford for her comments on earlier drafts.

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Diedrich, L., Boyce, E. ‘Breast Cancer on Long Island’: The Emergence of a New Object Through Mapping Practices. BioSocieties 2, 193–218 (2007). https://doi.org/10.1017/S1745855207005716

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