Biosocieties http://journals.cambridge.org/BIO Additional services for Biosocieties: Email alerts: Click here Subscriptions: Click here Commercial reprints: Click here Terms of use : Click here
Beyond the Politics of Inclusion and Difference Steve Epstein Biosocieties / Volume 3 / Issue 02 / June 2008, pp 234 - 236 DOI: 10.1017/S1745855208006169, Published online: 29 May 2008
Link to this article: http://journals.cambridge.org/abstract_S1745855208006169 How to cite this article: Steve Epstein (2008). Biosocieties, 3, pp 234-236 doi:10.1017/S1745855208006169 Request Permissions : Click here
Downloaded from http://journals.cambridge.org/BIO, IP address: 128.192.114.19 on 31 May 2015
j 234 j B O O K S F O R U M
Beyond the Politics of Inclusion and Difference By Steve Epstein Dept of Sociology, University of California San Diego, 9500 Gilman Dr #0533, La Jolla, CA 92093-0533, USA E-mail:
[email protected] doi: 10.1017/S1745855208006169
I am grateful for the astute commentaries on my book provided by Troy Duster and Vololona Rabeharisoa. Both of them are generous in their evaluations; both take the book seriously on its own terms and judge it in relation to its stated goals. If I may offer a heartfelt objection, both commentators can be faulted for undue modesty. Duster, observing that I synthesize the work of a ‘host of scholars’, lists several of them while somehow neglecting to include his own name—yet all those of us who study the ongoing redefinition of racial meanings via bioscientific processes owe him a tremendous debt for his pioneering work over many years (Duster, 1984, 1990, 2003, 2005). Similarly, Rabeharisoa rightly calls attention to the recent proliferation of case studies on the ‘problematization’ of a new politics of health by patient organizations and movements, but she fails to acknowledge her own significant contributions in just this domain (Rabeharisoa, 2006; Rabeharisoa and Callon, 2002, 2004). To the extent that I succeed in providing, in Inclusion, what Duster calls a needed overview of a wide arena of work, it is only because I was able to rely on the insights of scholars such as these. In Inclusion, I seek to explain how a particular way of thinking about identities, differences and inequalities in the United States has become entrenched within clinical research and pharmaceutical drug development, and I trace the consequences of this entrenchment for various social actors in the worlds of health, advocacy and state administration. I analyze the hybrid political configuration that promoted a new emphasis on sex and gender, racial and ethnic, and age categories in biomedical research; and I show how this political impetus was operationa-
lized, institutionalized and converted into common sense. I also weigh in on some of the limitations and unintended consequences of what I call the ‘inclusion-and-difference paradigm’, especially with regard to the goal of eliminating health disparities by group. So, what is the larger story here? As the commentaries from Duster and Rabeharisoa together suggest, there are various ways in which the ‘bigger picture’ suggested by such a research project might be drawn. Duster locates my work in relation to a broad question in social theory and the sociology of knowledge: how can the scientific and practical impulse to universalize and standardize be reconciled with the crucial scientific, political, and human need to recognize variation and diversity? Rabeharisoa sees me as contributing to a somewhat different overarching discussion: what are the new forms of biopolitics by which patients, concerned groups, state officials and other actors manage to remap the contours of ‘life itself’ (Rose, 2006)? I think they’ve both got it right: I have tried to show how the dilemma of generalizability that Duster raises has prompted new forms of political and biomedical engagement, but also how the new political alignments that Rabeharisoa depicts have altered understandings of how universality and particularity might be apprehended in the first place. At the same time, I have argued that the relatively narrow and constraining models of political organizing and scientific reasoning that have thereby arisen are inadequate, ultimately, to meet the challenges of promoting good health and meaningful biopolitical citizenship. I am especially pleased to extract from these commentaries the call for scholars to engage in detailed empirical work to flesh out the analysis that I began in Inclusion. Rabeharisoa emphasizes the need for close ethnographic study of the specific practices that are being invented, ‘on the ground’, as clinical investigators conform to new policies mandating inclusion and the measurement of difference. As she notes, the goals of such investigation must include identifying the modes of scientific reasoning employed and the theories of the body that are implicitly invoked. (Of course, some of this work has already been done [see Shim, 2002], and I was
Steven Epstein is Professor of Sociology at the University of California, San Diego. He is also the director of UCSD’s interdisciplinary Science Studies Program. His book, Inclusion: The politics of difference in medical research, was awarded the Robert K. Merton Prize by the American Sociological Association’s Section on Science, Knowledge, and Technology. Professor Epstein’s research and teaching have focused on a range of issues related to the politics of biomedical knowledge production; the politics of gender, race and sexuality; and the characteristics of social movements.
j B O O K S F O R U M j 235
in a position to benefit from it.) Duster’s comments suggest the further need to trace the differences in the attention to inclusion and difference as they play out in different nations or regions. There is indeed something distinctively ‘American’ in the story that I tell, though I also allude to the development of policies on inclusion of groups in countries such as Canada and the UK, as well as in the European Union (Epstein, 2007a: 273–276). There is much still to be learned about how collective identities and group differences are being apprehended in distinctive biopolitical contexts around the world (see Smart et al., forthcoming). Finally, Rabeharisoa points, quite intriguingly, to a substantial project that only the combined efforts of many scholars could make possible: a comparative theorizing of the links between the precise attributes of social problems in the biomedical domain and the specific modes of political work that they engender. This is a challenging undertaking, though I believe that the burgeoning literature in science and technology studies on patient groups and health movements is already beginning to move the field in this direction (Epstein, 2007b). Let me conclude by taking up a question that Rabeharisoa raises in a poignant and, indeed, deeply personal way: how can the scientific and political imperatives of inclusiveness, which seem both to lean on and to reinforce fairly rigid and limited forms of identity politics, be forced to reckon with the realization ‘that identity is fundamentally multiple, negotiable, and revisable’? As Rabeharisoa observes, my first line of critique in Inclusion is simply to argue for context-specific solutions to biomedical research problems: rather than assume that the categories that matter in clinical research are always and necessarily those categories that have been bequeathed to us by identity politics (which, as Duster notes, only results in the ‘inexorable reproduction of the ‘‘reality’’ of those categories’), let’s invoke just those specific categories that have plausible contextual relevance in each specific case. Rabeharisoa finds this solution inadequate and wants to go further: She proposes detaching the issue of identity from that of inclusion and emphasizing, instead, other ‘modalities for constituting identity and the social link’, including new collectives that have been shaped by technoscience as well as alternative models of citizenship, participation, and engagement.
I’m completely sympathetic to this move. In the conclusion to my book, I review the limitations of identity-based approaches and suggest that ‘there is much to be said for the invention and promotion of alternative models of solidarity—rooted, perhaps, as Donna Haraway has suggested, ‘‘in friendship, work, partially shared purposes, intractable collective pain, inescapable mortality, [or] persistent hope’’ [1997: 265]’ (Epstein, 2007a: 293–294). However, the crucial question is how any such alternative formulation can remain true to the open and contingent character of identity while still providing guidance to biomedical researchers who stand in 1 need of practical tools for their everyday work. Can an anti-essentialist conception of identity be ‘operationalized’ by clinical researchers who confront the ineluctable tension that Duster identifies between specificity and generalizability? I don’t know how to answer this question—in fact, I don’t know whether we yet possess the theoretical tools that would allow us to pose it properly. But I thank Rabeharisoa and Duster for their thoughtful suggestions about where our research might head as we grapple with new political configurations of identity and difference.
References Duster, T. (1984). A social frame for biological knowledge. In Duster, T. & Garrett, K. (Eds), Cultural perspectives on biological knowledge, 1–40. Norwood, NJ: Ablex. Duster, T. (1990). Backdoor to eugenics. New York: Routledge. Duster, T. (2003). Buried alive: The concept of race in science. In Goodman, A. H. Heath, D. & Lindee, M.S. (Eds), Genetic nature/culture: Anthropology and science beyond the two-culture divide, 258– 277. Berkeley: U California Press. Duster, T. (2005). Race and reification in science. Science, 307(5712), 1050–1051. Epstein, S. (2007a). Inclusion: The politics of difference in medical research. Chicago: U Chicago Press. Epstein, S. (2007b). Patient groups and health movements. In Hackett, E.J., Amsterdamska, O., Lynch, M. & Wajcman, J. (Eds), The handbook of science and technology studies, 499–539. Cambridge, MA: MIT Press. Gamson, J. (1995). Must identity movements selfdestruct? A queer dilemma. Social Problems, 42, 390–407. Haraway, D.J. (1997). Modest_witness@second_ millennium.Femaleman_meets oncomouse. New York: Routledge.
1 The dilemma here is analogous to that explored in the domain of collective action by Gamson (1995).
j 236 j B O O K S F O R U M
Rabeharisoa, V. (2006). From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France. Social Science & Medicine, 62, 564–576. Rabeharisoa, V., & Callon, M. (2002). The involvement of patients’ associations in research. International Social Science Journal, 54(171), 57–63. Rabeharisoa, V., & Callon, M. (2004). Patients and scientists in French muscular dystrophy research. In Jasanoff, S.(Ed.), States of knowledge: The coproduction of science and social order, 142–160. London: SAGE.
Rose, N. (2006). The politics of life itself: Biomedicine, power, and subjectivity in the twenty-first century. Princeton, NJ: Princeton UP. Shim, J.K. (2002). Race, class, and gender across the science-lay divide: Expertise, experience, and ‘difference’ in cardiovascular disease. PhD dissertation, Sociology, U California, San Francisco. Smart, A., Tutton, R., Ashcroft, R., Martin, P., Balmer, A., Elliot, R. et al. (forthcoming). Social inclusivity vs analytical acuity? A qualitative study of UK researchers regarding the inclusion of minority ethnic groups in biobanks. Medical Law International.
