Mixed Race Studies

The End of Race History? Not Yet

Center for Genetics and Society
2012-12-14

Osagie K. Obasogie, Associate Professor of Law
University of California, Hastings

Have we gone beyond race? Many argue society has now overcome centuries of strife to become “post-racial”—a moment that law professor Sumi Cho of DePaul University in Chicago refers to as “the end of race history”.

Two seemingly disparate developments have been used to lend support to this claim. In politics, Barack Obama’s 2008 election as the first racial minority-member to become US president has been lauded as a racially transcendent moment. In science, the completion of the Human Genome Project’s first draft in June 2000 offered seemingly definitive evidence that race is not real. As geneticist Craig Venter noted at the HGP announcement, “the concept of race has no genetic or scientific basis”…

…Two recent books by legal scholars address these issues. Jonathan Kahn’s Race in a Bottle provides a stunning case study of BiDil, the first drug to receive approval by the US Food and Drug Administration as a race-specific therapy. It was designed to treat African-Americans suffering from heart failure—based mainly on a mistaken belief that there are meaningful disparities in heart failure outcomes between blacks and whites caused by biological differences. Although BiDil was initially created as a race-neutral drug, Kahn offers a compelling account of the many influences that turned what is in essence a combination therapy of two widely available generic treatments into a pill “for black people only”…

…Dorothy Roberts’s Fatal Invention, now out in paperback, extends this insight to examine how the re-emergence of biological race is having a broader impact—not only on innovations such as genetic ancestry-testing and racialised aspects of DNA forensics, but also on how we think about basic notions of racial difference. Advocates of biological race argue that today’s use of race in biomedicine is different from past usages within science that supported racism, eugenics and questionable research practices…

Read the entire article here.

From Bang to Whimper: A Heart Drug’s Story

The New York Times
2012-12-24

Abigail Zuger, M.D.

Jonathan Kahn, Race in a Bottle: The Story of BiDil and Racialized Medicine in a Post-Genomic Age. Columbia University Press, December 2012, 336 pages.

On June 23, 2005, American medicine managed to take a small step forward and a giant step backward at precisely the same time, with government approval of the first medication to be earmarked for a specific racial group. It was BiDil, a drug designed to treat heart failure in blacks.

Enthusiasts hailed BiDil’s approval by the Food and Drug Administration as a landmark event in the nascent field of pharmacogenomics, which aims to create drugs tailored to fit an individual’s genetic makeup as precisely as a bespoke suit drapes its owner’s shoulders. Critics just winced and clocked one more misstep in medicine’s long history of race-related disasters.

You would think that the elucidation of the human genome would have cleared up most of the hoary untruths surrounding race and health. But as Jonathan Kahn makes clear in his worthy if convoluted review of the events surrounding the birth of BiDil, the genome has in many respects only made things worse.

It has been clear for decades that race has minimal relevance to the body’s inner workings. Research has repeatedly shown that the biologic variations among individuals of the same race are reliably great enough for race to retain little utility as a biologic predictor. You might as well sort people by height. Or, in the words of an editorial writer for Nature Biotechnology in 2005, “Pooling people in race silos is akin to zoologists grouping raccoons, tigers and okapis on the basis that they are all stripy.”…

Read the entire review here.

Race in a Bottle: The Story of BiDil and Racialized Medicine in a Post-Genomic Age

Columbia University Press
December, 2012
336 pages
Charts: 4, B&W Illus.: 1
Cloth ISBN: 978-0-231-16298-2

Jonathan Kahn, Professor of Law
Hamline University, Saint Paul, Minnesota

At a ceremony announcing the completion of the first draft of the human genome in 2000, President Bill Clinton declared, “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.” Yet despite this declaration of unity, biomedical research has focused increasingly on mapping that .1 percent of difference, particularly as it relates to race.

This trend is exemplified by the drug BiDil. Approved by the FDA in 2005 as the first drug with a race-specific indication on its label, BiDil was originally touted as a pathbreaking therapy to treat heart failure in black patients and help underserved populations. Upon closer examination, however, Jonathan Kahn reveals a far more complex story. At the most basic level, BiDil became racial through legal maneuvering and commercial pressure as much as through medical understandings of how the drug worked. Using BiDil as a central case study, Kahn broadly examines the legal and commercial imperatives driving the expanding role of race in biomedicine, even as scientific advances in genomics could render the issue irrelevant. He surveys the distinct politics informing the use of race in medicine and the very real health disparities caused by racism and social injustice that are now being cast as a mere function of genetic difference. Calling for a more reasoned approach to using race in biomedical research and practice, Kahn asks readers to recognize that, just as genetics is a complex field requiring sensitivity and expertise, so too is race, particularly in the field of biomedicine.

Contents

• Acknowledgments
• INTRODUCTION: Race and Medicine: Framing [Is] the Problem
• 1. ORGANIZING RACE: Paths Toward the Re-Biologization of Race in Modern Biomedical Research, Practice, and Product Development
• 2. THE BIRTH OF BIDIL: How a Drug Becomes “Ethnic”
• 3. STATISTICAL MISCHIEF AND RACIAL FRAMES FOR DRUG DEVELOPMENT AND MARKETING
• 4. CAPITALIZING [ON] RACE IN DRUG DEVELOPMENT
• 5. RACE-ING PATENTS/PATENTING RACE: An Emerging Political Geography of Intellectual Property in Biotechnology
• 6. NOT FADE AWAY: The Persistence of Race and the Politics of the “Meantime” in Pharmacogenomics
• 7. FROM DISPARITY TO DIFFERENCE: The Politics of Racial Medicine
• CONCLUSIONS AND RECOMMENDATIONS
• Notes
• Index

Race Under the Microscope: Biological Misunderstandings of Race

Center for Genetics and Society
2012-05-24

Despite the fact that advances in genetics undermine the notion that discrete and distinct racial groups exist at the biological level, the science of genetics is inadvertently reinforcing the myth that race is a biological, rather than a social, category. In this video, produced by the Center for Genetics and Society, a group of experts discusses the history and consequences of the misuse of racial categories in medicine and science. The video is a great resource for students and educators.

Race Under the Microscope features commentary on the misuse of race from esteemed professors Jonathan Kahn (Professor of Law, Hamline University), Dorothy Roberts (Professor of Law, Northwestern University), Osagie K. Obasogie (Professor of Law, University of California Hastings Law School), and Joseph Graves (Associate Dean for Research, Joint School for Nanosciences & Nanoengineering, Greensboro, NC). The excerpts used in the video were filmed during the 2011 Tarrytown Meeting.

Race in a Bottle

Scientific American
Volume 297 (January 1, 2007)
pages 40-45

Jonathan D. Kahn, Professor of Law
Hamline University, Saint Paul, Minnesota

Drugmakers are eager to develop medicines targeted at ethnic groups, but so far they have made poor choices based on unsound science. This article focuses on the drug, BiDil – a drug that combats congestive heart failure by dilating the arteries and veins of African American patients. The author expounds that there is no solid evidence that the drug should targeted towards only one ethnic group. The author includes the history of BiDil including its inception and then its reappearance with a race-based focus.

Read the entire article here.

“The idea that Hispanic is a coherent genetic category is just silly,” [Jonathan] Kahn said in a telephone interview. “It’s one of the most diverse—genetically and culturally and historically—populations you can find. The idea that it is genetically definable and distinct is just irresponsible.”

Rob Stein, “Race reemerges in debate over ‘personalized medicine’,” The Washington Post, July 31, 2011.

A race-based detour to personalized medicine

Canadian Medical Association Journal
Volume 184, Number 7 (2012-03-12)
DOI: 10.1503/cmaj.109-4133

Roger Collier, News Staff

Few experts in medical genetics would argue that June 23, 2005 wasn’t an important day. Consensus on whether it was a good or bad day is another matter. Some claim a major step on the long road to personalized medical care was taken. Others are far less convinced, suggesting it was the day the United States government decided, unwisely, to push the field of medical genetics into the heated realm of racial politics.

On that date, the US Food and Drug Administration (FDA) approved, for the first time, a drug for a specific race, to wit, the fixed-dose combination drug isosorbide dinitrate and hydralazine (BiDil) for use as a heart disease medication within the black population, who have a much higher risk of heart failure than whites…

…The licensing of isosorbide dinitrate/hydralazine thus became a turning point in discussions on the merits of race-based medicine, a debate that continues to rage. Critics of race-specific therapies argue that focusing on genetics rather than on social and economic inequalities will not reduce disparities in health outcomes and access to care among different ethnic groups. Furthermore, they say, race is a social, rather than a biological, construct.

“Using race is a bad proxy for genetic ancestry,” says Althea Grant, chief of the Epidemiology and Surveillance Branch, Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, at the US Centers for Disease Control and Prevention.

This opinion is shared by one of the world’s most famous geneticists: Craig Venter, the genetics pioneer who led the team that first sequenced the human genome in 2001. He has referred to the use of race and ethnicity in medical genetics as a crude tool and a personal pet peeve, suggesting that it will no longer be necessary once the price of sequencing genomes falls to an amount that would make it reasonable to sequence everybody’s genome, a figure he pegged at US$1000…

…The first problem with using race in medical genetics is determining which races constitute a part of someone’s background. Few people have extensive knowledge of their ancestral lineage, and skin colour and other external markers don’t tell the full story. Even people who are aware of their mixed heritage often place themselves in one camp — or are put there by others. Prominent examples include US President Barack Obama and professional golfer Tiger Woods, who are often referred to as black even though the former has a white mother and the latter’s mother hails from Thailand.

“People tend to self-identify with a particular race more than another even if there is a mix,” says Grant. “They might not even know all the ancestries that are in the mix.”

In some areas of medicine, using race as a screening tool has already been shown to create problems, both practical and ethical. That’s why states abandoned the practice of screening only black newborns for hemoglobinopathies, such as sickle cell disease, Grant and colleagues concluded (Ethn Health 2011;16:377–88). The state of Georgia, the last holdout for ethnicity-based newborn screening, discontinued its use in 1998…

“If we go back to its origins, we find that BiDil did not begin as an ethnic drug. Rather it became ethnic over time and through a complex array of legal, commercial, and medical interventions, that transformed the drug’s identity,” wrote Jonathan Kahn, a law professor at Hamline University in Saint Paul, Minnesota (www.councilforresponsiblegenetics.org/pageDocuments/PLMVM6FTAO.pdf). Unlike “racialized medicine, which treats race as genetic, the use of race in medical practice has many legitimate and important places. Collecting broad-based epidemiological data is perhaps foremost among these. Only by using social categories of race is it possible to identify and track racial disparities in health, health care access and outcomes.”

Read the entire article here.

Book review: What’s the use of race? Modern governance and the biology of difference

BioNews
Number 634 (2011-11-21)

Dr. Rachael Panizzo

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…

…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’…

…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….

Read the entire review here.

What’s the Use of Race? Modern Governance and the Biology of Difference

The MIT Press
May 2010
7 x 9, 296 pp., 7 illus.
ISBN-10: 0-262-51424-9
ISBN-13: 978-0-262-51424-8

Edited by

Ian Whitmarsh, Assistant Professor
Department of Anthropology, History, and Social Medicine
University of California, San Francisco

David S. Jones, Associate Professor of History and Culture of Science and Technology
Massachusetts Institute of Technology

The post–civil rights era perspective of many scientists and scholars was that race was nothing more than a social construction. Recently, however, the relevance of race as a social, legal, and medical category has been reinvigorated by science, especially by discoveries in genetics. Although in 2000 the Human Genome Project reported that humans shared 99.9 percent of their genetic code, scientists soon began to argue that the degree of variation was actually greater than this, and that this variation maps naturally onto conventional categories of race. In the context of this rejuvenated biology of race, the contributors to What’s the Use of Race? investigate whether race can be a category of analysis without reinforcing it as a basis for discrimination. Can policies that aim to alleviate inequality inadvertently increase it by reifying race differences?

The essays focus on contemporary questions at the cutting edge of genetics and governance, examining them from the perspectives of law, science, and medicine. The book follows the use of race in three domains of governance: ruling, knowing, and caring. Contributors first examine the use of race and genetics in the courtroom, law enforcement, and scientific oversight; then explore the ways that race becomes, implicitly or explicitly, part of the genomic science that attempts to address human diversity; and finally investigate how race is used to understand and act on inequities in health and disease. Answering these questions is essential for setting policies for biology and citizenship in the twenty-first century.

Contributors: Richard Ashcroft, Richard S. Cooper, Kjell A. Doksum, George T. H. Ellison, Steven Epstein, Joan H. Fujimura, Amy Hinterberger, Angela C. Jenks, David S. Jones, Jonathan Kahn, Jay S. Kaufman, Nancy Krieger, Paul Martin, Pilar N. Ossorio, Simon Outram, Ramya Rajagopalan, Dorothy Roberts, Pamela Sankar, Andrew Smart, Richard Tutton, Ian Whitmarsh