Anthropological Insights Into the Use of Race/Ethnicity to Explore Genetic Contributions to Disparities in Health

Abstract

Summary.Anthropological insights into the use of race/ethnicity to explore genetic contributions to disparities in health were developed using in-depth qualitative interviews with editorial staff from nineteen genetics journals, focusing on the methodological and conceptual mechanisms required to make race/ethnicity a genetic variable. As such, these analyses explore how and why race/ethnicity comes to be used in the context of genetic research, set against the background of continuing critiques from anthropology and related human sciences that focus on the social construction, structural correlates and limited genetic validity of racial/ethnic categories. The analyses demonstrate how these critiques have failed to engage geneticists, and how geneticists use a range of essentially cultural devices to protect and separate their use of race/ethnicity as a genetic construct from its use as a societal and social science resource. Given its multidisciplinary, biosocial nature and the cultural gaze of its ethnographic methodologies, anthropology is well placed to explore the cultural separation of science and society, and of natural and social science disciplines. Anthropological insights into the use of race/ethnicity to explore disparities in health suggest that moving beyond genetic explanations of innate difference might benefit from a more even-handed critique of how both the natural and social sciences tend to essentialize selective elements of race/ethnicity. Drawing on the example of HIV/AIDS, this paper demonstrates how public health has been undermined by the use of race/ethnicity as an analytical variable, both as a cipher for innate genetic differences in susceptibility and response to treatment, and in its use to identify 'core groups' at greater risk of becoming infected and infecting others. Clearly, a tendency for biological reductionism can place many biomedical issues beyond the scope of public health interventions, while socio-cultural essentialization has tended to stigmatize 'unhealthy behaviours' and the communities where these are more prevalent.

Genes, race and research ethics: who’s minding the store?

“…For example, one recent literature review found that articles reporting associations between race, genotype and health outcomes most often include no explanation of criteria used to assign the race/ethnicity of subjects 57. Another study, based on interviews with the editorial staff of a number of prominent genetic journals, found that the editors have not become engaged with critiques regarding the inappropriateness of racial/ethnic variables for genetics research and instead view their use in genetic science as separate from social science concerns 15 58. Similarly, a discourse analysis of recent publications discussing the debate about use of race in the Human Genome Project, concludes that the concept of race as a biological entity remains prevalent, bolstered by rhetorical claims that scientific truth will eradicate any racist interpretations of these notions 56…”

“…When health indicators are observed to vary by these racial/ethnic categories, researchers seem compelled to offer explanations for those differences, presuming inherent group differences, either cultural or biological, depending on their disciplinary background 11 12. Despite their otherwise rigorous approach to research, genetic scientists, who are also regularly using these categories, are likewise apt to offer such interpretations, tending toward biological determinism or genetic reductionism 13 – 15…”

A critical review of racial/ethnic variables in osteoporosis and bone density research

“…In 1993, the US government mandated the inclusion of racial/ethnic minorities in all federally funded research, including that funded by the National Institutes of Health (NIH). While the intention of this mandate is to promote equity in the potential health benefits of publicly funded research, many researchers have begun to focus analysis on these variables and to interpret correlations involving them [35,36]. Kahn [37] argues that federal guidelines regarding the inclusion of racial/ethnic categories are so vague that they encourage researchers to conflate race/ethnicity with genetics.…”

Race and Genomics. Old Wine in New Bottles?

“…As an interdisciplinary team exploring the use of racial categories in biomedical research from the perspective of epidemiology (GTHE), anthropology (GTHE, SMO), sociology (RT, AS), bioethics (RA) and science and technology studies (RT, PM, AS), what we hope to off er to this trans-disciplinary dialogue on "race and genomics" in the NTM. Journal of the History of Science, Technology and Medicine draws on: our analysis of the longstanding debate within the biomedical literature concerning the meaning and aetiological utility of "race" as well as interviews with 22 geneticists working on the editorial boards of high-impact genetics and biomedical journals and 36 researchers working on UK-based biobanking and pharmacogenetic projects -interviews which examined variation in the conceptualisation and operationalisation of racial categories, and the perceived utility of these categories in the analytical design of research, the interpretation of research fi ndings, and the translation thereof across diff erent research and clinical contexts (see Outram/Ellison 2006a, Martin et al 2007.…”

“…And even though they were, for the most part, well aware of the limited reliability and validity of racial categories as markers of diff erences in genetic variation, they nonetheless saw the evidence of such diff erences between "racial" groups -however modest and context-specifi c these diff erences might be -as compelling grounds for using racial categories in their research as markers of genetic diff erence (Outram/Ellison 2006a, 2006b, Tutton et al 2008. Likewise, while most of these interviewees acknowledged that the diff erences in disease phenotypes observed amongst diff erent "racial" groups were the product of gene-environment interactions rather than of genes per se; and that cultural and socioeconomic diff erences between "racial" groups meant these groups were often exposed to very diff erent "environments, " the interviewees remained pre-occupied with the potential impact of "racial" diff erences in genetic variation on the diff erential distribution of disease phenotypes by "race" and with how they might best use racial categories to explore these genetic diff erences in their research.…”