Hyperdiagnostics: Postcolonial Utopics of Race-Based Biomedicine

Abstract

The expansion of biomedical research into countries outside the United States and Western Europe is positing new biological links between populations based on race. This expansion includes six international projects occurring in Barbados, premised on the idea that the population is genetically representative of other black people. Based on ethnographic research tracking one such study, a genetics of asthma project, this article explores the ways Caribbean meanings of ethnicity and illness are reworked as Barbadian state medical practitioners become involved in facilitating the international genetics research on race and disease. As the state attempts to participate in an imagined future of genetic medicine, the hyperspecificity of genetic technologies create new medical meanings of race and disease. These changes rely on a paradoxical response by medical practitioners toward the high technology American genetic research as both authoritative and inapplicable, creating unexpected etiologies of illness and ethnicity.

Key Words:

• asthma
• biomedicalization
• ethnicity
• genetics
• racialization

ACKNOWLEDGEMENTS

I thank the genetics researchers and facilitators for their interest and time in the research. I am indebted to the Barbadian medical practitioners who offered their insights and thoughts, and to the participant families for all of our interactions. I also thank João Biehl, Carol Greenhouse, Emily Martin, and James Boon for their invaluable engagement with the materials over the years, each in his or her own way. My sister Megan, my brother Jason, my mother Dorothy, and Rebecca Schaffer offered much-needed critical suggestions on earlier drafts, as did the anonymous reviewers. This research was made possible by a grant from the Center for Health and Wellbeing of Princeton University. Preparation of the manuscript was supported by a grant from the Ethical, Legal, and Social Implications Research Program, National Human Genome Research Institute (P20-HG003387) through the Center for Genome Sciences at the University of North Carolina, Chapel Hill, and by a grant from the Andrew W. Mellon Foundation through the Center for the Study of Diversity in Science, Technology, and Medicine at the Massachusetts Institute of Technology.

Notes

For ethnographic analyses of the way American biomedical researchers take up racial classifications, see Fullwiley (2007) and Montoya (2007); also see the essays collected in Koenig, Lee, and Richardson (2008).

Genetics of race is also employed in the use of DNA ancestry tests offered by biotechnology companies (see Bolnick et al. 2007). Stephan Palmié (2007) has argued that the adjudication of race based on genetics confers a supposedly apolitical hereditary material reality on social mores (such as hypodescent and linear identifications) that have been long problematized.

Such debates, in the Journal of the American Medical Association, Nature, the New England Journal of Medicine, Lancet, and other medical and scientific journals, often draw on genetic diversity research conducted by population geneticists. Genetic diversity research involves categorizing human populations by geographic areas and specific genetic loci chosen for their correlation with these areas. Population geneticists, as Reardon (2005) has shown, disagree on how best to categorize race. This includes disputes over how to determine the race of the population being studied (Rosenberg et al. 2002:298). For example, self-reporting is contrasted with inferring ancestry through genotyping. Such population genetics enters biomedicine through projects attempting to use genetic data on populations considered representative of particular races to account for medical outcomes (see Cavalli-Sforza 2007; Jorde et al. 2001; Romualdi et al. 2002; Wilson et al. 2001). For historical and anthropological analyses of such projects at the National Institutes of Health, see Epstein 2007; M'Charek 2005; Reardon 2005.

Ambiguities in the biomedical uses of race are highly visible in NIH practices. Since 1993, with the Revitalization Act, the NIH has had a policy advocating the inclusion of “women and members of racial and ethnic groups” in clinical research (see Reardon 2005). Lee et al. have noted that the NIH uses the racial classification scheme of the Office of Management and Budget (OMB), also used by the U.S. Census Bureau (2001:42; see also Shields et al. 2005). However, the OMB considers race and ethnicity categories sociocultural constructs, in accordance with the suggestions of the American Anthropological Association. The result of these policies has been a diversity of views of race and ethnicity in NIH-funded research. Due to the policy of considering race a social cultural construct, researchers applying for NIH funding almost ubiquitously use the term ethnicity instead of race. Ethnicity in this sense usually involves self-identification on a questionnaire as one of the U.S. census populations, and the uses of this identification in research varies from biological to social meanings in NIH-funded projects (Lee et al. 2001; on the radical variation in methods of determining race in biomedical research, see Shanawani et al. 2006).

Pharmacogenomic and genetic medical research is founded on the categorization of populations according to the differential distribution of medically relevant genes. This includes making patient populations genetically representative. In some approaches, the study population is taken to represent disease populations in general: DeCODE's approach in Iceland explores the biomedically relevant genes through study of the biological materials and medical records from one country (see Pálsson and Rabinow 1999 and 2005). Other teams pose the prevalence of genetic predisposition as particular to geographically or historically related populations (e.g., Ashkenazi women, African Americans). In genetics of asthma, as with many other common diseases (e.g., heart disease, diabetes, and cancers) populations are classified along ethnic and racial distinctions.

Anthropological analyses of science have explored the subjectivities of scientists as they create knowledge (e.g., see Latour and Woolgar 1979 on the production of scientific concepts; Rabinow 1996 and 1999 on reflexivity in the practice of biotechnology; and Gusterson 1996 on the culture of nuclear scientists). And recent science-studies research has explored the political economy of the science of race and disease (see Kahn 2004; Wailoo and Pemberton 2006). I went to Barbados to examine medical, governmental, and familial practices and interpretations that interact with this science and are integral to its production. I wanted to find what was at stake for the physicians, families, and state officials who formed the infrastructure for the genetics project: the desires and evaluations by which this science is created and has a cultural life, making new medical meanings, national positioning, and patient identities.

All names used, excluding cited authors, are pseudonyms.

Michael Fortun has argued that a discourse of speed and high technology is integral to the practice of genomic research (1998). More recently Fortun has argued that the framing of an excess of genetic information is similarly constitutive.

I thank Carol Greenhouse for this interpretation.

For example, at a meeting on the genetics-of-obstructive-sleep-apnea project, a Bajan researcher noted that the Queen Elizabeth Hospital (QEH) rejected his requests for a diagnostic laboratory to explore sleep apnea. The result of the meeting was that the Johns Hopkins team would explore providing the sleep lab and funding while the Bajan physician would facilitate purchase of the polysomnography equipment and location of the laboratory.

See Aisha Khan (2004) and Deborah Thomas (2004) for subtle explorations of the relationship of nationality and ethnicity in the Caribbean countries of Trinidad and Jamaica, respectively. As Khan has argued, official discourses are themselves multiple in their approaches to race:

When Indians' context and point of reference is India, they are not ‘white,’ but they are ‘Aryan,’ they are ‘Caucasian.’ Caucasian/Aryan are associated with Brahmanical (that is, high culture) Hinduism. As indentured immigrants, however, they are even further from ‘white,’ becoming, as ‘coolies,’ increasingly ‘black.’ Both because of and irrespective of their claims to Hinduism in the estimation of bourgeois sectors of Trinidadian society. (2004:41)

This contrasts with other links of nationhood and race: Robotham (1996) has argued that prior to the 1960s, the identity of “West Indian” was a way of disassociating Caribbean people from black Americans and Africans. As Karen Olwig (1999) has argued, discourses of Africa and history in the Caribbean today enact claims to political authority, responding particularly to changes wrought by tourism. H. Hoetnik (1985) reminds us that such analyses are largely restricted to the English-speaking Caribbean. Paul Gilroy (1993) has argued for the utility of black identities linking Caribbean, British, and North American peoples.

Anthropologists working in the Eastern Caribbean have explored this importance of nation to ideas of race: see Yelvington (1993); for subtle discussions of the ways claims of heterogeneity and hybridity are constituted in Trinidad, see Khan (1993 and 2004) and Segal (1993).

For social analyses of the genetics of racial admixture, see Bolnick et al. 2007; Graves 2001; Santos 2004.

See Amade M'Charek (2005) for an analysis of technologies as central to categories produced by genomics, including race.

Montoya has called such biomedical use of social and cultural experiences of racial groups “bioethnic conscription” (2007).

Biomedical categories, like goods in Boon's reading (1999:299), “go crazy, or are already so ‘foundationally.’” Boon cites James Clifford in this insight.

This conflation contrasts with the more specific and I think useful meaning of new kinds of citizenship among authors that Rose and Novas cite, those employed by Deborah Heath, Rayna Rapp and Karen-Sue Taussig and by Adriana Petryna (Heath et al. 2004; Petryna 2002; also see Schaffer et al. 2008). For Heath, Rapp, and Taussig, families (and companies and public organizations) organize around diagnoses of genetic conditions, creating new political practices. Petryna argues that in the wake of Chernobyl, Ukrainian individuals represent themselves using the language of biological expertise. This is a reflexive use of scientific expertise to frame health and illness within a political economy of medicine.

For subtle ethnographic attention to such plurality, see Vincanne Adams's (2001) work on the meaning of “science” in Tibet.

As Jean Pouillon wrote:

Ambiguity is not simply polysemy, the fact that a verb sometimes has one meaning and sometimes another, each of them unequivocal; it is, rather, that, above all, there is always doubt at the heart of the conviction, and that the affirmation itself indicates that it could always be suspended. (1982:5)

Additional information

Notes on contributors

Ian Whitmarsh

IAN WHITMARSH is an Assistant Professor in the Department of Anthropology, History, and Social Medicine at the University of California, San Francisco. His research explores tensions in the uses of biomedical categories linking race and disease among researchers, medical practitioners, government officials, and patients in the Caribbean and the United States. Recent publications include Biomedical Ambiguity: Race, Asthma, and the Contested Meaning of Genetic Research in the Caribbean (2008, Cornell University Press) and “Biomedical Ambivalence: Asthma Diagnosis, the Pharmaceutical and Other Contradictions in Barbados,” American Ethnologist 35(2008).