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.

Review of Jonathan Kahn, Race in a Bottle: The Story of BiDil and Racialized Medicine in the Post-Genomic Age

The American Journal of Bioethics
Volume 15, 2015 – Issue 10
pages W4-W5
DOI: 10.1080/15265161.2015.1067339

Nathan Nobis, Associate Professor of Philosophy
Morehouse College, Atlanta, Georgia

In 2005 the Food and Drug Administration (FDA) approved the drug BiDil, a combination of two generic vasodilators (hence bi-dil), with specific indication to treat heart failure in black patients. The drug was approved largely on the basis of results from a small clinical trial of only self-identified black patients.

Obviously, however, if a drug works with a particular population, that gives no indication that drug will work only with that population or have unique benefits solely for that population: The drug might work for anyone, of any population, and so works well for a subpopulation. So there is some mystery why BiDil was approved, with this specific indication, on this basis. In Race in a Bottle: The Story of BiDil and Racialized Medicine in the Post-Genomic Age, law professor and historian Jonathan Kahn investigates this mystery.

BiDil’s developers argued that there must be some latent genetic explanation for the drug’s success with black patients—this argument underlies their claim that BiDil uniquely benefits black people. They suggest that race serves as useful surrogate or proxy until further genetic information is revealed.

A major goal of the book is to rebut this explanation. Kahn argues that, according to the best science (and philosophical theorizing about the nature of races), there is no genetic basis for race: There are no unique genes that classify (those who many see as) white people as white and (those who many see as) black people as black, and so on. Race-specific efficacy in drugs is therefore unlikely and dubious, given the lack of race-specific biological mechanisms needed for these drugs to perform as promised.

What role should race play in medicine and public health, then? While Kahn provides positive proposals here, another of his major goals is to argue that race-specific drugs have the (typically unintended) negative consequence of undermining potentially effective projects to address racial health disparities. If we believe that health inequalities are, at root, an unfortunate consequence of genetics and biology—and not a consequence of unfair social, political, and educational opportunities, environmental quality, inequalities in health care access, racism in health care, and other social causes—then there is little reason to focus on these very challenging and demanding issues of justice and the distribution of health-related social, educational, and vocational goods: Just take a pill! But if the pills don’t work, and they lead us to ignore or downplay strategies that will work, then the drugs wrongfully distract—to the detriment of those the drugs were developed to benefit.

In what follows, I briefly summarize the book’s introduction, eight chapters, and very helpful “Conclusions and Recommendations,” and comment on some of the main issues of each chapter…

Read the entire review in HTML or PDF format.

Cook: Race and the practice of medicine

The Casper Star Tribune
Casper, Wyoming
2015-10-24

Edith Cook

Edith Cook/Perspective

We now know once and for all that race is not a biological phenomenon but a social construct. The Human Genome Project, completed in 2000, established that, genetically, all of us human beings are more than 99.9 percent the same. When the project was completed, geneticist Greg Venter stated that the accomplishment illustrates that “the concept of race has no genetic or scientific basis.”

Astoundingly, racial and ethnic categories have appeared in the patents of gene-related biomedical patents. Drug firms increasingly target “ethnic niche markets” for drug development, promotion, and sale. That’s partly because the National Institute of Health Revitalization Act of 1993 mandates the use of census racial categories. The Food and Drug Modernization Act of 1997 also strongly encourages these outdated practices. The complexities of patent laws add to the problem.

These facts are thoroughly examined in Jonathan Kahn’s “Race in a Bottle.” (He means pill bottle.) Kahn begins with “the story of BiDil.” In the 1980s, BiDil was a drug for everyone; it became racialized “primarily in response to an FDA ruling that placed in jeopardy the value of its owner’s original nonracial patent.”

Soon the commercial aspect of promoting the drug became center stage. Often African Americans are held to white norms, yet health disparities would be more aptly compared to other underserved groups, such as recent immigrants…

Read the entire article here.

Race and ancestry in biomedical research: exploring the challenges

Genome Medicine 2009
Volume 1, Number 8 (2009-01-21)
DOI: 10.1186/gm8

Timothy Caulfield
Faculty of Law and School of Public Health Research, Health Law Institute
University of Alberta

Stephanie M Fullerton
Department of Medical History and Ethics and Department of Genome Sciences
University of Washington School of Medicine

Sarah E Ali-Khan
Program on Life Sciences Ethics and Policy, McLaughlin-Rotman Centre for Global Health, University Health Network
University of Toronto

Laura Arbour
Faculty of Medicine, Island Medical Program
University of British Columbia

Esteban G. Burchard
Department of Biopharmaceutical Sciences and Department of Medicine, Divisions of Pharmaceutical Sciences and Pharmacogenetics, Pulmonary & Critical Care Medicine, and Clinical Pharmacology
University of California, San Francisco

Richard S. Cooper
Department of Epidemiology & Preventive Medicine, Stritch School of Medicine
Loyola University

Billie-Jo Hardy
Program on Life Sciences Ethics and Policy, McLaughlin-Rotman Centre for Global Health, University Health Network
University of Toronto

Simrat Harry
Faculty of Law and School of Public Health Research, Health Law Institute
University of Alberta

Robyn Hyde-Lay
Genome Alberta, Calgary, Alberta, Canada

Jonathan Kahn
Hamline University School of Law

Rick Kittles
Department of Medicine, Section of Genetic Medicine, Department of Human Genetics
University of Chicago

Barbara A. Koenig
Program in Professionalism & Bioethics
Mayo College of Medicine

Sandra S. J. Lee
Stanford Center for Biomedical Ethics
Stanford University Medical School

Michael Malinowski
Paul M Hebert Law Center
Louisiana State University, Baton Rouge

Vardit Ravitsky
Department of Medical Ethics and Center for Bioethics
University of Pennsylvania, Philadelphia

Pamela Sankar
Department of Medical Ethics and Center for Bioethics
University of Pennsylvania, Philadelphia

Stephen W. Scherer
for Applied Genomics, The Hospital for Sick Children, and Department of Molecular Genetics
University of Toronto

Béatrice Séguin
Leslie Dan School of Pharmacy; Program on Life Sciences Ethics and Policy, McLaughlin-Rotman Centre for Global Health, University Health Network
University of Toronto

Darren Shickle
Leeds Institute of Health Sciences,
University of Leeds, United Kingdom

Guilherme Suarez-Kurtz
Pharmacology Division
Instituto Nacional de Câncer, Rio de Janeiro, Brazil

Abdallah S. Daar
Program on Life Sciences Ethics and Policy, McLaughlin-Rotman Centre for Global Health, University Health Network; Department of Public Health Sciences and of Surgery; McLaughlin Centre for Molecular Medicine; Department of Medicine
University of Toronto

The use of race in biomedical research has, for decades, been a source of social controversy. However, recent events, such as the adoption of racially targeted pharmaceuticals, have raised the profile of the race issue. In addition, we are entering an era in which genomic research is increasingly focused on the nature and extent of human genetic variation, often examined by population, which leads to heightened potential for misunderstandings or misuse of terms concerning genetic variation and race. Here, we draw together the perspectives of participants in a recent interdisciplinary workshop on ancestry and health in medicine in order to explore the use of race in research issue from the vantage point of a variety of disciplines. We review the nature of the race controversy in the context of biomedical research and highlight several challenges to policy action, including restrictions resulting from commercial or regulatory considerations, the difficulty in presenting precise terminology in the media, and drifting or ambiguous definitions of key terms.

Correspondence

Recent advances in biomedical research promise increasing insights into complex contributions to traits and diseases, and there is hope that these will lead to global health benefits [1,2] . Analytical and social-justice considerations both recommend thoughtful assessment of the role of social identity, particularly racial or ethnic identity, in the design, conduct and dissemination of clinical and basic science research. Controversies ranging from James Watson’s comments on racial differences in intelligence [3] to the adoption of racially targeted pharmaceuticals, such as the African-American heart-failure drug BiDil [4-7] , remind us that use of the concept of race in biomedical research can have far-reaching, often unanticipated social consequences.

The problem of race in scientific research is not a new one, and the issue seems to perpetually reappear and remain fundamentally unresolved [8] . We are, however, entering a new era in which the fruits of initiatives, such as the Human Genome Project [9,10] , the International Haplotype Map Project [11] , and the recently proposed 1000 Genomes Project [12] , promise to elaborate more fully than ever before the nature and extent of human genetic variation and its relation to social identity. A recent interdisciplinary workshop, ‘Ancestry in health and medicine; expanding the debate’, hosted by the Alberta Health Law Institute and the McLaughlin-Rotman Centre for Global Health, in Toronto, Canada, sought to debate the current status and concerns surrounding these new scientific data, how we relate genetic variation to individual and population-level differences in observable traits, and what this might mean for the effective addressing of significant disparities in health status and disease. A central motivating consideration was how best to secure the anticipated benefits of genetic and related forms of biomedical research in the face of inevitable misunderstandings or misuse concerning genetic variation and race.

Here, we draw together the perspectives of the scholars who participated in the workshop, who have considered the race issue from the vantage point of a variety of disciplines: anthropology, bioethics, clinical medicine, ethical, social, cultural studies, genetic epidemiology, genome sciences, global heath research, law and the social sciences. We review the nature of the race controversy in the context of biomedical research and highlight several challenges to policy action…

Read the entire correspondence here.

I consider racialized medicine to be the inappropriate use of racial categories in medical practice and drug development. It often involves constructing practices around mistaken assumptions of some innate genetic difference among racial groups. For me, the important issue is not whether to use race in biomedicine, but how to use it–and when. There are very real health disparities in the country that are based on a long history of social, economic, and legal practices that have consistently and deliberately subordinated groups of people based on their race. As a social and historical phenomenon the health impacts of race are very real and can only be addressed by taking race into account. The key is to recognize that in these contexts it is the social and historical practices of racism that have become manifest in racialized bodies as the very real biological differences of health disparities. That is, it is history and culture that has created these biological differences in the incidence of disease across racial groups–not genes. —Jonathan Kahn

“An Interview with Race in a Bottle author Jonathan Kahn,” Columbia University Press, (January 16, 2013). http://www.cupblog.org/?p=8710.

Addressing Racial/Ethnic Health Disparities Best Practices for Clinical Care and Medical Education in the 21st Century

University of Texas, Austin
2013-09-23 through 2013-09-24

One of the primary goals of the US Department of Health and Human Services, the National Institutes of Health, and many public health programs is the reduction of health disparities in the United States. However, significant racial/ethnic disparities persist in the prevalence of disease, access to medical care, quality of care, and health outcomes for the most common causes of death (including cardiovascular and lung disease, infectious disease, cancer, diabetes, and accidents). At this conference, nationally-recognized speakers will discuss the causes of such disparities and describe new approaches in clinical care and medical education that improve care, achieve better health outcomes, and reduce racial/ethnic health disparities. We will also discuss how these best practices can be incorporated into medical training at the new Dell Medical School at The University of Texas and at other medical schools around the country. One key goal of this conference is to help design a cutting-edge curriculum that will better prepare medical students to meet the challenges and opportunities of 21st century medicine.

Conference registration is open to anyone interested in attending this event. See the Continuing Medical Education (CME) tab for information regarding continuing education for the September 23rd portion of the conference.

The second day of the conference (September 24) is open to invited participants only. Discussions and working groups on the second day will focus on developing new pedagogical approaches and innovative learning modules for the pre-clinical curriculum at the Dell Medical School, with the goal of more effectively integrating training on human genomic variation, race/ethnicity, health disparities, and social/environmental determinants of health into the medical curriculum.

Speakers

• Deborah Bolnick, PhD
• Vence Bonham, JD [Coauthor of article “Mixed Race: ”]
• Understanding Difference in the Genome Era
• Richard Garcia, MD
• Paul Godley, MD, PhD, MPP
• Ernesto Gonzalez, MD
• Clarence Gravlee, PhD [Author or article “How race becomes biology: Embodiment of social inequality”]
• Helena Hansen, MD, PhD
• John Hoberman, PhD [Author of Black and Blue: The Origins and Consequences of Medical Racism]
• Seth Holmes, MD, PhD
• Jonathan Kahn, JD, PhD [Author of Race in a Bottle: The Story of BiDil and Racialized Medicine in a Post-Genomic Age]
• Jay Kaufman, PhD [Contributor to What’s the Use of Race? Modern Governance and the Biology of Difference]
• Diane Magrane, MD
• Kyriakos Markides, PhD
• Jamie McGuire, MD
• Jonathan Metzl, MD, PhD
• Michael Montoya, PhD
• Rayna Rapp, PhD
• Dorothy Roberts, JD [Author of Fatal Invention: How Science, Politics, and Big Business Re-create Race in the Twenty-First Century]
• Charles Rotimi, PhD [Author of article “Are medical and nonmedical uses of large-scale genomic markers conflating genetics and ‘race’?”]
• Karen-Sue Taussig, PhD

For more information, click here.

Mapping “Race”: Critical Approaches to Health Disparities Research

Rutgers University Press
2013-08-12
256 pages
6 figures, 8 tables, 6 x 9
Paper ISBN: 978-0-8135-6136-3
Cloth ISBN: 978-0-8135-6137-0
Ebook ISBN: 978-0-8135-6138-7

Edited by:

Laura E. Gómez, Professor of Law, Sociology, and Chicano Studies
University of California, Los Angeles

Nancy López, Associate Professor of Sociology
University of New Mexico

Forward by:

R. Burciaga Valdez

Researchers commonly ask subjects to self-identify their race from a menu of preestablished options. Yet if race is a multidimensional, multilevel social construction, this has profound methodological implications for the sciences and social sciences. Race must inform how we design large-scale data collection and how scientists utilize race in the context of specific research questions. This landmark collection argues for the recognition of those implications for research and suggests ways in which they may be integrated into future scientific endeavors. It concludes on a prescriptive note, providing an arsenal of multidisciplinary, conceptual, and methodological tools for studying race specifically within the context of health inequalities.

Table of Contents

• List of Figures and Tables
• Foreword by R. Burciaga Valdez
• Preface
• 1. Introduction: Taking the Social Construction of Race Seriously in Health Disparities Research / Laura E. Gómez
• Part I: Charting the Problem
  • 2. The Politics of Framing Health Disparities: Markets and Justice / Jonathan Kahn
  • 3. Looking at the World through “Race”-Colored Glasses: The Fallacy of Ascertainment Bias in Biomedical Research and Practice / Joseph L. Graves Jr.
  • 4. Ethical Dilemmas in Statistical Practice: The Probelm of Race in Biomedicine / Jay S. Kaufman
  • 5. A Holistic Alternative to Current Survey Research Approaches to Race / John A . Garcia
• Part II: Navigating Diverse Empirical Settings
  • 6. Organizational Practice and Social Constraints: Problems of Racial Identity Data Collection in Cancer Care and Research / Simon J. Craddock Lee
  • 7. Lessons from Political Science: Health Status and Improving How We Study Race / Gabriel R. Sanchez and Vickie D. Ybarra
  • 8. Advancing Asian American Mental Health Research by Enhancing Racial Identity Measures / Derek Kenji Iwamoto, Mai M. Kindaichi, and Matthew Miller
• Part III. Surveying Solutions
  • 9. Representing the Multidimensionality of Race in Survey Research / Allya Saperstein
  • 10. How Racial-Group Comparisons Create Misinformation in Depression Research: Using Racial Identity Theory to Conceptualize Health Disparities / Janet E. Helms and Ethan H. Mereish
  • 11. Jedi Public Health: Leveraging Contingencies of Social Identity to Grasp and Eliminiate Racial Health Inequality / Arline T. Geronimus
  • 12. Contextualizing Lived Race-Gender and the Racialized-Gendered Social Determinants of Health / Nancy López
• Notes on Contributors
• Index

Black and White Medicine

PsycCRITIQUES
Volume 58, Number 32 (August 2013)
5 pages

Alejandra Suarez, Professor of Psychology
Antioch University, Seattle

A review of Race in a Bottle: The Story of BiDil and Racialized Medicine in a Post-Genomic Age by Jonathan Kahn New York, NY: Columbia University Press, 2013. 311 pp. ISBN 978-0-231-16298-2 (hardcover); ISBN 978-0-231-53127-6 (e-book), hardcover.

What is your race? (a) Mestizo, (b) Greek, (c) Creole, (d) Peninsular, (e) Mulatto, (f) Quadroon, (g) Octoroon, (h) Indian, (i) Chinese, (j) Japanese, (k) Moor, (l) Syrian, or (m) Nubian? In another time and place, these may have been the available choices. Obviously these categories are not anthropologically or scientifically based.

Currently the United States uses the definition of racial categories as published by the Office of Management and Budget (1997) in its Revised Directive 15. Directive 15 stems from the civil rights movement; it aims to provide consistent data and a uniform language in order to increase fairness in society. All federally funded research with human participants is required to address issues of race, although the OMB explicitly states that its categories are not anthropologically or scientifically based.

The current racial choices in the United States are (a) American Indian or Alaska Native, (b) Asian, (c) Black or African American, (d) Native Hawaiian or other PacificIslander, and (e) White. There are two categories for data on ethnicity: (a) Hispanic or Latino and (b) not Hispanic or Latino (Office of Management and Budget, 1997). Many people objected that it is difficult to fit into these categories, so in the 2000 census, one could also self-select multiple categories of race/ethnicity. Selecting one’s race is complicated: It is about identities; it is not about genetic differences.

The human genome project, completed in June 2000, concluded that all human beings, regardless of race, have pretty much the same genes. In fact, the American Anthropological Association has asserted that race is “a worldview, a body of prejudgments that distorts our ideas about human differences and group behavior” and that “racial beliefs constitute myths about the diversity in the human species and about the abilities and behavior of people homogenized into ‘racial’ categories” (American Anthropological Association, 1998, para. 8, and cited in book under review, p. 40).

Race is an ideology that changes according to time and place. However, at the same time that the human genome project has unequivocally demonstrated that race is a construct with no biological validity, the idea of race as a genetically based population variant is becoming more and more entrenched in biomedical research and practice. How is it possible?…

Read the entire review here.

Racial profiling in medicine

Nature Medicine
Volume 19, Number 7 (July 2013)
page 808
DOI: 10.1038/nm.3254

Aravinda Chakravarti, Professor of Medicine
McKusick-Nathans Institute of Genetic Medicine
Johns Hopkins University

Jonathan Kahn, Race in a Bottle: The Story of BiDil and Racialized Medicine in a Post-Genomic Age, Columbia University Press, 2012. 28 pp., ISBN: 0231162987

The field of human genetics is moving beyond using genomics as a tool for deeper understanding of human disease pathophysiology to the possibility of translating this knowledge for efficient treatment. A particular emphasis is being placed on Individualized medicine’, promising to tailor treatment based on each of our genomes. This ideal vision, however, can cause unease when our notions of genetic individuality intersect with those of ancestry and race. Jonathan Kahn’s book, Race in a Bottle, is a contemporary medical story born of this nexus. In it, he skillfully uses the story of the drug BiDil, a therapeutic for heart failure marketed specifically for African Americans (but whose use has declined markedly because it provides no unique benefit in comparison to similar drugs), as the backdrop for examining the expanding role of race in medical genomics, even when the same science has called the existence of race into serious doubt.

As Kahn highlights in the book, the innocuous birth of BiDil in 1992 was no predictor of its contorted history. BiDil is a combination of two vasodilators, hydralazine and isosorbide dinitrate (H-I), which are presumed to act through the nitric oxide pathway to provide benefit to patients with congestive heart failure. They were combined into one pill for easier administration, although each was already available in generic form. Between 1980 and 1991, two major clinical trials in the United States, involving patients of both European and African ancestries, clearly established that angiotensin-converting-enzyme inhibitors should be the preferred drug for patients with heart failure and that the H-1 combination should be used in individuals who did not benefit from this frontline therapy. Sensing a market opportunity, Medco Research obtained the intellectual property rights to BiDil, demonstrated its bioequivalence to the H-1 formulation and approached the US Food and Drug Administration(FDA) in 1996 for approval to market this ‘new’ drug. The FDA refused, arguing that clinical trials showing the utility of H-1 for heart failure did not meet the stiff criteria for such approval.

There was a suspicion that the nitric oxide response, and heart failure, was somehow different in blacks than in whites. So Jay Cohn, a respected cardiologist and owner of the original BiDil patent, reanalyzed the original clinical trial data to demonstrate that H-1 did work better in blacks than whites, a contention described and contested in the book. This finding not only led to a new patent but prompted its new owner, NitroMed, to conduct a fresh clinical trial in 2001, involving only African-American patients with heart failure, to demonstrate BiDils utility in this group. None of these facts are in doubt. What is doubted, however, is the implicit assumption that BiDil is not useful for white patients, the chronology of key events and the motivations of various actors in medicine, industry and government—factors that morphed an otherwise convenient drug formulation into a race-specific drug. Kahn makes the charge that “BiDil was not about personalizing medicine; it was about exploiting race to obtain cheaper, quicker FDA approval for a drug.”…

…Genetic analysis strongly suggests that early humans first arose in Africa and emerged out of Africa only ~100,000 years ago, a fairly recent development, evolutionarily speaking, which explains why we are all closely related. Any classification of biological races within our species is arbitrary because there are no major discontinuities in our diversity across the globe. Importantly, genetic data show that currently populous groups are not necessarily reflected by their past abundance, and human history is one of repeated admixture, not maintenance of purity. It is this genetic admixture that has left an imprint on every human disease with a genetic component, including common chronic ones. Thus, it is quite unlikely that the genetic variations underlying our diseases, which represent only a small fraction of our genetic diversity, will vary markedly across humanity…

Read or purchase the article here.

Book Review: Race in a Bottle

GeneWatch
Council for Responsible Genetics
Volume 26 Issue 1, March 2013

Lundy Braun, Royce Family Professor in Teaching Excellence and Professor of Medical Science and Africana Studies
Brown University

In Race in a Bottle, Jonathan Kahn tracks the contentious history of BiDil, the first drug targeted specifically to African Americans. Ironically, race-based drug treatment emerged in the wake of the sequencing of the human genome, a project that theoretically promised both to scientifically refute the notion of genetically distinct racial groups and to usher in an era of personalized medicine. Though hyped by researchers, the FDA, and the press as an important first step toward personalized medicine, BiDil is a drug administered to patients based on their membership in a group…

…Critical to Kahn’s argument regarding evidence is the fact that the clinical trials on which the company based its patent application for BiDil were never designed to compare racial difference in response to the drug. Using “care of the data” as an organizing theme, Kahn highlights one of the many troubling aspects of this controversy: the extraordinarily loose, if not sloppy, construction of what passed as evidence in the patent application and FDA hearings. From the use of misleading statistics on mortality from heart failure in African Americans, to the failure to define the central variable of race, to the design of a clinical trial (A-HeFT) that included only African Americans (and therefore could not determine differential efficacy) to the lack of any mechanistic understanding for a differential effect, Kahn shows that attention to the data was consistently problematic when it came to matters of race. The chapter on the FDA hearings is particularly illuminating…

Read the entire review here.