21 November 2011
ByAppeared in BioNews 634
What's the Use of Race? Modern Governance and the Biology of Difference
Published by Massachusetts Institute of Technology Press
ISBN-10: 0262514249, ISBN-13: 978-0262514248
Buy this book from Amazon UK
Decoding the human genome has revealed details of our evolution and patterns of migration across the world. The study of genetic diversity between ethnic groups can help explain the ways in which race influences our biology and susceptibility to disease. It promises to deliver a new era of personalised medicine, where an individual's unique DNA profile is used to make predictions about their future health; where specialised drugs are tailored to individual patients, based in part on their genetic ancestry.
But what do we mean by 'race', exactly? Is race a relevant biological or medical category, and how is it defined in practice?
These issues are considered in the collection of essays 'What's the use of race? Modern governance and the biology of difference', edited by Dr Ian Whitmarsh of the University of California San Francisco, and Dr David Jones at the Massachusetts Institute of Technology. The contributors explore the use of race in biomedical research and some of the emerging practical applications in medicine and forensic science. Their diverse and sometimes conflicting perspectives result in an engaging book that highlights the complexity of the issue.
Genetics has become the foundation of a new 'biocitizenship', where it is our civic duty to know and share our own genetic information and engage with our health at a molecular level. Common genetic make-up replaces common social experience, and group identities are carved along lines of shared genetic traits, 'reinterpreting existing political identities and creating new ones', says Professor Dorothy Roberts, from Northwestern University. Social and political categories of difference - such as gender or race - are assumed to have a biological basis, and their relevance to medicine is rarely questioned, argues Professor Steven Epstein, of the same institution.
But is race a biological concept? This question asks us to consider the complex relationships between race, ethnicity, culture, family history and geographic ancestry. The simple answer, though, with which most authors seem to agree, is that the socially-defined racial categories commonly in use do not map onto fixed biological categories in any meaningful way.
Instead, race is better understood as a fluid, dynamic, and relational concept, both socially and biologically. Biologically, genetic differences between human populations exist on a continuum, with no sharp boundaries distinguishing between races, and more similarities than differences, say Simon Outram (postdoctoral fellow at Dalhousie University) and Professor George Ellison (London Metropolitan University).
If race is not an easily defined category, how is it used in practice in biomedical research? Dr Richard Tutton and colleagues at Lancaster University interviewed human genetics researchers to explore their perceptions of race. Primarily, researchers seemed concerned with the pragmatic, rather than conceptual, issues. Self-identification of race is used in most studies as it is considered a standardised method, reproducible, and publicly accepted. Its limitations are recognised, but it is seen as a useful proxy to 'genetic ancestry', what they consider a more objective marker of racial identity.
Professor Joan Fujimura (University of Wisconsin) and colleagues describe how racial categories are embedded in the technologies and practices of genetic research, such as genome-wide association studies. Apart from introducing social and historical assumptions into genetic research, this practice also reinforces and legitimises the use of race as a biological category. Dr Tutton and Professor Fujimura both cite examples of scientists adopting alternative research methods to circumvent and move 'beyond race', by excluding it from their analysis or using geography and family history instead to establish ancestry.
In the medical setting, subtle statistical differences are often interpreted as blanket differences between races, and individual patients are assumed to reflect the average characteristics of their race. But Jay Kaufman, associate professor of epidemiology at McGill University, and Professor Richard Cooper, of Loyola University, Chicago, demonstrate that in practice, a patient's ethnic identity adds little to the diagnosis or prognosis of disease and is rarely medically relevant.
The essays of Professor Jonathan Kahn (Hamline University), and Pamela Sankar, associate professor of bioethics at the University of Pennsylvania emphasise how embedded racial categories are in forensic science, giving examples of DNA fingerprinting and phenotyping. Originally, racial information was used in DNA fingerprinting technology to improve accuracy, but as it has improved substantially, Professor Kahn argues it is now superfluous, irrelevant, and risks perpetuating racial stereotypes - 'conflating race, genes and violent crime'.
Dr Sankar describes forensic DNA phenotyping technology, in which a DNA sample could allegedly reveal 'all the things a sketch artist might want to know' about the perpetrator of a crime. In practice, though, it is currently limited to predicting gender and race. As Dr Sankar says, inferring a person's physical characteristics from genetic ancestry information is not straightforward, and can lead to false assumptions. Nevertheless, it is being used in some law enforcement cases in the United States, Netherlands, and UK.
The use of race in medicine has a difficult history, and the emergence of race-based medicine is often seen as positive and empowering to minority communities. Some groups demand inclusion and recognition as distinct populations in medicine and biomedical research. Epstein says such racial groups are encouraged to see themselves as medically incommensurable and essentially different, requiring race-specific drugs for race-specific diseases.
But Angela Jenks, a medical anthropologist at Los Angeles Southwest College, believes it ultimately fosters a politics of difference: 'What does it mean for marginalised groups to base their struggle for equal access to care on the assertion of a fundamental difference?'
As a biological view of race is adopted, social and health inequalities are transferred to the field of biomedicine. The consequence, say Professor Fujimura and co-authors, is the 'sanitising and depoliticising of race concepts' as they become biological, not social, issues.
Should race be used at all in medical research? Many authors argue that its inclusion reifies the concept of race as a fundamental human characteristic. But Dr Kaufmann, Professor Cooper, and Harvard School of Public Health Professor Nancy Krieger suggest race does have a place in biomedical research, as a social category – including information about race or ethnicity is a way of documenting health inequalities, which would otherwise be invisible and ignored.
The essays in 'What's the use of race' are insightful and provocative, offering a range of perspectives on a topic that has perhaps not received as much attention as it demands. The book would appeal to a range of readers – from scientists and medical practitioners to social scientists and ethicists. On the surface, race-based medicine appears empowering and positive, and a way of addressing health inequalities. However, these essays highlight some of the unintended consequences and problematic issues surrounding the concept of race in medicine and biomedical research.
Buy What's the Use of Race? Modern Governance and the Biology of Difference from Amazon UK.