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THE COMMERCIALIZATION OF RACE: SCIENCE, TECHNOLOGY AND MEDICINE

By Dr. David S. Jones

CAMBRIDGE, MASSACHUSETTS, 21 APRIL 2008David S. Jones, M.D., Ph.D., a historian and psychiatrist at MIT and Harvard Medical School, is the author of Rationalizing Epidemics: Meanings and Uses of American Indian Mortality Since 1600. He is also the director of MIT's Center for the Study of Diversity in Science, Technology, and Medicine. Dr. Jones here shares his thoughts on the emergence of commercial and medical products targeted on the basis of race. Beyond ethical and practical dilemmas, does this trend re-legitimize the idea of race as a biological category, perpetuating the very problems that scholars wish to alleviate? What tensions does this raise between the hard sciences and the social sciences? Such questions will be explored in the Center's upcoming conference entitled "What's the Use of Race?" from 25-26 April 2008.

BiDil was the tip of an iceberg. The growing belief that races really were genetically and biologically different had led to widespread efforts to commercialize racial differences in medications, vitamins, and even jogging shoes (e.g. the Nike Air Native).

The current presidential campaign has brought renewed attention to the meanings and importance of race in the United States. But politicians and political analysts are not the only ones involved in the fray. Over the past five years, scientists and social scientists have also renewed their engagement in race debates in ways that could not have been foreseen even ten years ago.

Back in the 1990s, a détente existed among scientists and social scientists. After World War II, a consensus had emerged that race was an ill-defined and dangerous concept, both socially and scientifically. Scholars increasingly recognized that different societies parsed human diversity differently, exposing commonly used racial categories as historically and culturally contingent. In countless cases, scientific sanction of racial differences had enabled inhumane policies, from slavery to eugenics and the Holocaust. Scientists, for the most part, agreed that no physical or genetic traits divided human populations into distinct racial and ethnic types. Race seemed nothing more than a social construct, and a nefarious one at that.

Wanting to deepen our understanding of the history of how science and race had shaped each other, in 2000 historian Evelynn Hammonds established the Center for the Study of Diversity in Science, Technology, and Medicine (CSD) at the Massachusetts Institute of Technology (MIT). Funded by The Andrew W. Mellon Foundation, the CSD brought together scholars to study the reciprocal interactions among race, science, politics and society. A series of workshops and an on-going working group on science and race produced a wide range of collaborations and publications by scholars in history, anthropology, sociology and the sciences. But as this work progressed, it became clear that the interactions of race and science were no longer only of historic interest.

When I came to MIT in 2004, two intriguing developments were emerging. First, the consensus that race was largely a social construct faced a new challenge from the emerging field of genomics. When the Human Genome Project was completed in 2000, scientists initially thought that they had proven that race had no basis in genetics. As Bill Clinton stated so eloquently at the celebratory news conference, "I believe one of the great truths to emerge from this triumphant expedition inside the human genome is that in genetic terms, all human beings, regardless of race, are more than 99.9 percent the same … The most important fact of life on this Earth is our common humanity." Since that time, however, scientists had realized that the level of human genetic diversity is substantially higher, possibly by a factor of ten or more. That amount of diversity is large enough to enable a gene chip, given a cheek swab and a large genomic database, to predict — sometimes — a person's race and ancestry with surprising accuracy.

Second, considerable buzz was brewing about BiDil®, a medication that seemed to have race-specific effects. A combination of two drugs, BiDil had been tested in the 1980s as a treatment for heart failure but had been found to be ineffective. When researchers later reanalyzed the data, however, they found a suggestion that there might have been benefit in one small subgroup of patients — African Americans. To test this suspicion, they performed another trial, this time only in patients who self-identified as black. When this trial proved successful (see The New England Journal of Medicine), the Food and Drug Administration licensed the drug.

It was the first time, and still the only time, that the FDA had granted a race-specific approval. The FDA's decision, in June 2005, produced fierce controversy. Medical researchers and epidemiologists debated whether the new trial and the re-analysis of the old trial really proved a race-specific effect of BiDil. Social scientists fumed that the FDA's action gave the government's blessing to unsubstantiated claims that races are biologically distinct. But advocates of black health, from the Congressional Black Caucus to the NAACP and the Association of Black Cardiologists supported BiDil, arguing that BiDil might contribute to the elimination of the shocking health disparities that exist between African Americans and other Americans.

To explore these tensions, the CSD hosted a conference in April 2006 on "Race, Pharmaceuticals, and Medical Technology," focusing on the dilemmas raised by BiDil. The talks by epidemiologists, clinicians, historians, sociologists, legal scholars and anthropologists attracted a dynamic audience, including representatives from Nitromed, the company that makes BiDil, and the NAACP, which had received funding from Nitromed. This led to a series of heated exchanges-about whether race is a legitimate category for medical practice, about the intimate details of clinical trials, and about whether or not BiDil simply exploited loopholes in patent law and FDA policy for commercial gain (for example, see "BiDil: Race Medicine Or Race Marketing?" from the journal Health Affairs).

Discussions at this conference revealed that BiDil was the tip of an iceberg. The growing belief that races really were genetically and biologically different had led to widespread efforts to commercialize racial differences in medications (e.g. BiDil), vitamins (e.g. GenSpec), cosmetics and dermatology (e.g. the Skin of Color Society) and even jogging shoes (e.g. the Nike Air Native).

These developments inspired our second conference, in March 2007, on "The Business of Race and Science". Many of the participants from the first conference returned to continue the dialogue about the science and social science of race. Discussions in some areas made great progress. For instance, a presentation about the booming business of genetic ancestry testing led to a collaboration that culminated in an influential editorial in Science last fall, critiquing the scientific basis of this industry. Even though we had sought to steer clear of BiDil, the tensions about that drug, which had become a commercial failure, once again resurfaced. Advocates of BiDil accused our conferences of contributing to the deaths of tens of thousands of African Americans. Specifically, they argued that conference speakers, and other social scientists, had cast doubt on the legitimacy of race as a biological concept. This gave Medicare and other insurers an excuse to make BiDil a third-tier medication, something too expensive for routine use. As a result, only a small percentage of the patients who might benefit from it were actually getting it. These people, so they claimed, were dying because of us (for an account of this, see Anne Pollock's Medicating Race, pp. 306-311).

Such dramatic confrontations have made these conferences unusually lively by academic standards. However, they are not what has been most interesting to me. Instead, what vexes me are the fundamental tensions about the very nature and utilities of race. Despite the long-standing critiques of the concept of race from biologists, anthropologists and social scientists, race continues to thrive as a category of analysis among scholars, pundits and the conventional wisdom. State and federal institutions in the United States routinely collect data about race and ethnicity. The National Institutes of Health requests that researchers include racially and ethnically diverse populations in their studies. Journals in fields as diverse as genetics, public health and sociology report data on race and ethnicity, and use these variables as significant factors in their analyses. This pursuit of race (race-defined data) has produced overwhelming documentation of racial disparities from (regarding) birth rates to education, income, crime, punishment, disease, medical treatment and life expectancy. Even if race has no biological basis- and it might, depending on what geneticists turn up -- it remains a powerful social category in the United States, influencing access to health, wealth and power.

Many scholars believe that research must consider race if we are to fully understand human biology and experience. Critics, meanwhile, argue that race is a hollow and misleading concept that leads to invidious distinctions. Research on race simply perpetuates false faith in the reality of race. Similarly, while advocates of social justice argue that racial disparities must be documented before they can be alleviated, skeptics point out that our vast existing knowledge of disparities has not yet led to decisive social or political action against them.

What should be done? Should the concept of race be invoked to further the goals of science or social justice? Do racial and ethnic distinctions produce natural categories for scholarly or political analysis? Do the benefits of including diverse populations in research outweigh the potential harm caused by reifying racial and ethnic distinctions? Will efforts to improve the precision of these categories with subtler distinctions based on ancestry or genetic markers increase the utility of the resulting data? What role do journal editors and the media have as gatekeepers and mediators of public discussions of race and ethnicity? What hopes and conflicts are embedded in analyses of race as a scientific, medical or social category? These are fundamental questions that do not lend themselves to easy answers.

For instance, last fall PLoS Medicine published an exchange between two groups of researchers-many of whom had been active participants in the CSD conferences-about the utility of race in the practice of medicine. Both sides make compelling arguments, preventing simple answers (see PLoS Medicine, September 2007). Many scholars feel a "damned if we do, damned if we don't" attitude towards the topic of race and find it easier to sweep difficult questions under the carpet to allow research and policy to proceed without raising ugly tensions.

But avoidance never produces cogent resolution. Realizing that tensions over BiDil, race-specific sneakers or racially-sensitive forensic databases can never be resolved until the underlying dilemmas are confronted, the CSD decided to take them head on. Our third conference, "What's the Use of Race?" will again bring together a range of scholars to debate the fundamental meanings and uses of race in law, science, medicine and governance.

Although we would be happy to avoid the tense dramas of past conferences, we understand that the tension is inevitable, perhaps even necessary. The emotional anguish that accompanies debates about race is a marker of the profound relevance of the issues at hand. Though some might consider it more polite to pretend that all is well with race in America, recent events-from Katrina to the presidential campaign-suggest a more complicated reality. Only by welcoming dialogue and controversy can we hope to make progress through the tensions and towards a future of possible resolutions. Without this honest and difficult work, we risk a future of irrelevant scholarship, ineffective policy and continuing inequalities that cause such harm to the bodies and psyches of all Americans.



Conference: What's the Use of Race?
Center for the Study of Diversity in Science, Technology, and Medicine
Massachusetts Institute of Technology
Cambridge, Massachusetts
25 - 26 April 2008

Researchers and journal editors in medicine, science, law, and social science explore the competing interests that make studies of race both feared and desired.

The conference is free and open to the public, but pre-registration is requested. Full information is available at web.mit.edu/csd.

Related Readings

Dr. Jones recommends the following books and academic research papers:

The Mismeasure of Man
By Stephen Jay Gould

Paperback: 444 pages
Revised and expand edition
W. W. Norton & Company, New York, 1996
ISBN-10: 0393314251
ISBN-13: 978-0393314250
$17.95

Two Volumes

An American Health Dilemma: Race, Medicine, and Health Care in the United States
By W. Michael Byrd, and Linda A. Clayton

Hardcover: 624 pages
Routledge, New York, 2001
ISBN-10: 0415927374
ISBN-13: 978-0415927376
$49.95

An American Health Dilemma, Volume One: A Medical History of African Americans and the Problem of Race: Beginnings to 1900
By W. Michael Byrd, and Linda A. Clayton

Hardcover: 588 pages
Routledge, New York, 2000
ISBN-10: 0415924499
ISBN-13: 978-0415924498
$49.95

Dying in the City of the Blues : Sickle Cell Anemia and the Politics of Race and Health, Studies in Social Medicine
By Keith Wailoo

Hardcover: 352 pages
University of North Carolina Press, Chapel Hill 2001
ISBN-13: 9780807825846
$45.00

Killing the Black Body: Race, Reproduction, and The Meaning of Liberty
By
Dorothy Roberts

Paperback: 384 pages
Vintage, December 29, 1998
ISBN-10: 0679758690
ISBN-13: 978-0679758693

Refiguring "race": epidemiology, racialized biology, and biological expressions of race relations
By
Nancy Krieger

International Journal of Health Services
2000; 30:211-216

Stormy Weather: "race," gene expression, and the science of health disparities
By
Nancy Krieger

American Journal of Public Health
2005; 95:2155-2160

More Book Tips

All titles are chosen by the editors as being of interest to Culturekiosque readers.

The Race Beat: The Press, the Civil Rights Struggle, and the Awakening of a Nation
By Gene Roberts and Hank Klibanoff

Hardcover: 528 pages
Knopf (November 2006)
ISBN-10: 0679403817
ISBN-13: 978-0679403814
$30.00

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