Mixed Race Studies

How Not To Talk About Race And Genetics

BuzzFeed
2018-03-30

Micah Baldwin / Via Flickr: micahb37

Race has long been a potent way of defining differences between human beings. But science and the categories it constructs do not operate in a political vacuum.

This open letter was produced by a group of 68 scientists and researchers. The full list of signatories can be found below.

In his newly published book Who We Are and How We Got Here, geneticist David Reich engages with the complex and often fraught intersections of genetics with our understandings of human differences — most prominently, race.

He admirably challenges misrepresentations about race and genetics made by the likes of former New York Times science writer Nicholas Wade and Nobel Laureate James Watson. As an eminent scientist, Reich clearly has experience with the genetics side of this relationship. But his skillfulness with ancient and contemporary DNA should not be confused with a mastery of the cultural, political, and biological meanings of human groups.

As a group of 68 scholars from disciplines ranging across the natural sciences, medical and population health sciences, social sciences, law, and humanities, we would like to make it clear that Reich’s understanding of “race” — most recently in a Times column warning that “it is simply no longer possible to ignore average genetic differences among ‘races’” — is seriously flawed…

Read the entire letter here.

Will Personalized Medicine Challenge or Reify Categories of Race and Ethnicity?

Virtual Mentor: American Medical Association Journal of Ethics
Volume 14, Number 8 (August 2012)
pages 657-663

Ramya Rajagopalan, Ph.D., Postdoctoral Research Fellow
Department of Sociology
University of Wisconsin, Madison

Joan H. Fujimura, Ph.D., Professor of Sociology; Professor of Science and Technology Studies
Robert F. and Jean E. Holtz Center
University of Wisconsin, Madison

In the last 5 years, medical geneticists have been conducting studies to examine possible links between DNA and disease on an unprecedented scale, using newly developed DNA genotyping and sequencing technologies to quickly search the genome. These techniques have also allowed researchers interested in human genetic variation to begin to catalogue the range of genetic similarities and differences that exist across individuals from around the world, through initiatives such as the International Haplotype Mapping Project. These studies of human genetic variation promise to produce new kinds of information about our DNA, but they have also raised ethical questions.

Early results from genome-wide studies of possible links between DNA and various medical conditions are being used by various actors to develop what they call “personalized medicine,” the effort to tailor and individualize diagnoses and treatments for use during routine medical care. The promises of personalized medicine are built on the idea that each individual’s genome is unique. They are also built on the idea that genetic variation among individuals will help explain differential susceptibilities to disease and why some patients respond better to some treatments than others. To this end, researchers have focused on characterizing genetic differences between individuals and groups…

…We note two ethical dilemmas posed by the claims made by these and other similar studies that attempt to link genetics, ancestry, and disease, particularly when ancestries are described in terms of continent of origin, for example, European, African, and Asian. Such labels are based on socioculturally defined U.S. categories of race and ethnicity, such as white, black, and Asian. The first dilemma arises because these studies are based on a relatively small subset of individuals who identify within any of these continental ancestry or race groupings. Thus, any extension of study findings to others who identify within these broad groupings would be fraught with problems of accuracy and precision. Indeed, much genetic evidence suggests that those who identify with a particular U.S. race or ethnicity census category are quite genetically heterogeneous. Thus, there is no neat correspondence between genetic variation and one’s assumed race or ethnicity. Indeed, no single pattern of genetic variation is diagnostic of affiliation with any particular race or ethnicity.

Second, and consequently, many worry that the new technologies being used to develop personalized medicine may also become technologies that are used to define “genetic signatures” for, or “genetic stereotyping” of, different racial or ethnic groups. This aspect of personalized medicine, if developed and nurtured into broader clinical use, will popularize the idea that it is possible to infer underlying genetic makeup from an observer-defined or self-reported race or ethnicity, when even proponents of using race in genetics research argue that this is a logical fallacy. This possibility recalls some of the past attempts to link race and biology, e.g., the eugenics movements of the early twentieth century…

…Nor is race new to American medical genetics. Many scholars have analyzed the American eugenics movements of the early twentieth century and the more ethically aware field of medical genetics that they eventually gave rise to in the mid-twentieth century. Prior to the start of the Human Genome Project, medical genetics focused primarily on relatively rare, familially inherited diseases. Certain generalizations about the relationships between race and genetics, now part of popular understanding and medical training programs, grew out of these studies. For example, medical school and college biology curricula continue to propagate the idea that some single-gene, highly heritable diseases, like Tay-Sachs disease or sickle-cell anemia, are prevalent in only certain groups—as in Jewish and African American groups, respectively—than other groups. What is often not acknowledged is that Tay-Sachs has also been observed at high prevalence in non-Jewish groups in Quebec, Canada and that sickle-cell and other hemoglobin disorders are common in many groups around the world. The misconception that a particular disease like sickle-cell is specific to African Americans may lead to patients being misdiagnosed or diagnosed too late in the progression of disease simply because they are not of the ethnic group “marked” by the disease…

…Personalized medicine is at a crossroads. It may be used to sustain old beliefs about racial differences, yoking them to supposed differences in health and susceptibilities to illness. This in turn may fuel the view that our genetics establishes an innate, definitive roadmap of our future health. However, recent studies of hundreds of common complex diseases suggest that genetics has only a small part to do with our susceptibilities to these diseases.

An alternative route for personalized medicine is for its practitioners to take stock of the various environmental onslaughts that individuals are subjected to and tailor medical diagnoses and treatments by considering each patient’s unique complement of environmental and biological factors that may contribute to health or disease. If personalized medicine is to bear out its name and become truly “personalized,” then a focus on racial differences at the level of the genome constitutes a step off the path with many ramifications, including the possibility of racial and ethnic stereotyping and discrimination during routine medical care that could lead to misdiagnoses and ineffective treatment regimens. Efforts to achieve personalized medicine in clinical settings would do better to focus on patterns in genomes and how such patterns may be associated with disease, rather than trying to find genetic correlates for existing racial and ethnic categories…

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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