How Not To Talk About Race And Genetics

Posted in Articles, Health/Medicine/Genetics, Letters, Media Archive on 2018-03-31 02:37Z by Steven

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.

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So what we’re left with is race as this very crude proxy for difference that has all the power to explain issues that relate very directly to social justice. We need to really move beyond race.

Posted in Excerpts/Quotes on 2017-03-26 01:53Z by Steven

Race takes on a particular relevance in the United States, given our history and also the political climate now. In science, we see the way race has become this enduring variable that explains things like oppression. It’s very powerful and it resonates, so there’s even more responsibility to use it carefully and to really uncouple and deconstruct what it’s a proxy for. While most people would argue that we need to break down what race is standing in for in those studies, that research doesn’t actually happen. So what we’re left with is race as this very crude proxy for difference that has all the power to explain issues that relate very directly to social justice. We need to really move beyond race. —Sandra Soo-Jin Lee

Lynette Chiu, “Dr. Sandra Soo-Jin Lee: Toward a More Precise Genetics,” Guernica / a magazine of global arts & politics, February 27, 2017. https://www.guernicamag.com/dr-sandra-soo-jin-lee-toward-a-more-precise-genetics/.

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Dr. Sandra Soo-Jin Lee: Toward a More Precise Genetics

Posted in Articles, Health/Medicine/Genetics, Interviews, Media Archive on 2017-03-25 20:30Z by Steven

Dr. Sandra Soo-Jin Lee: Toward a More Precise Genetics

Guernica / a magazine of global arts & politics
2017-02-27

Lynette Chiu
Brooklyn, New York

The medical anthropologist on the imperative to move beyond race in genetic research and the explanatory power of life experience and inequality.

For decades, the idea that excavating the genetic origins of disease could transform treatment of the body has lived in the sea of public imagination, buoyant but as yet unrealized. The Human Genome Project, a landmark initiative undertaken between 1990 and 2003, identified and analyzed all the genes found in humans, and sowed the potential for new understanding of major illnesses. It engendered hope of a future in which genetic makeup could be the primary factor in determining a person’s care. Researchers could make endless shapes out of a sandbox of data that was blind to race—that problematic and omnipresent variable in the biomedical sphere.

But it is not a simple thing to scrub race from human tissue samples or from the minds of the experts seeking answers, and it remains stubbornly inextricable from genetic research. Investigating the history, intricacies, and implications of this is Dr. Sandra Soo-Jin Lee, a medical anthropologist and senior research scholar at the Center for Biomedical Ethics at Stanford University, who has been studying the role of race in genomic science since the late 1990s. One of her principal interests is biobanks—the various repositories of samples that scientists turn to to test their hypotheses. She identifies them as chronicles of society’s evolving efforts to distinguish between groups; the sorting and labeling of their contents are a collision of the biological and the sociopolitical. The result is the physical matter of thousands upon thousands of individuals demarcated by an inconsistent jumble of terms such as “nationality,” “ethnicity,” and “skin color.”.

In her 2015 paper “The Biobank as Political Artifact: The Struggle Over Race in Categorizing Genetic Difference,” published in The Annals of the American Academy of Political and Social Science, Dr. Lee is forthright about the dangers of genetic studies built around samples identified by race. “The unqualified racial labeling of DNA that strips genes of the social context and experience of those who have donated these materials,” she writes, “allows for a pendulum shift in scientific discourse that racializes genes.” Race can end up standing in for factors, such as diet and environment, that go unaccounted for in gene-focused studies. The subsequent findings can then trickle down to affect how we explain differences in disease burden, create health policy, and progress toward eliminating health disparities between populations. With the term “precision medicine” on the rise, referring to a care model that translates insights around genetic variation into clinical practice, the need to inspect and augment how those insights come about has grown more urgent…

Read the entire article here.

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The Color of American Genomics: Genetics in the Era of Racialized Medicine

Posted in Health/Medicine/Genetics, Live Events, Media Archive, Politics/Public Policy, United States on 2016-12-08 03:36Z by Steven

The Color of American Genomics: Genetics in the Era of Racialized Medicine

University of California, Los Angeles
306 Royce Hall
340 Royce Drive
Los Angeles, California 90095
Friday, 2016-12-09, 13:30-16:30 PST (Local Time)

SPEAKERS:

Michael Montoya, Associate Professor
University of California, Irvine

Sandra Soo Jin Lee, Senior Research Scholar
Stanford University

Joan Donovan
University of California, Los Angeles

Élodie Grossi
University of California, Los Angeles/EPIDAPO

Since the 1960s, American ethno-racial categories have been increasingly used to respond to the inclusion of ethnic and racial minorities in biomedicine and genetics. It has been the researchers’ very dedication to the positive ideals of diversity and to the struggle against medical disparities that has paradoxically allowed racial categories to massively gain ground in science. This half-day symposium aims to shed light on the scope of racialized science and the political and ethical considerations raised by this new paradigm.

This workshop is free and open to the public

Presented by EPIDAPO.  Co-sponsored by the UCLA Institute for Society and Genetics.

For more information, click here.

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Theories of Race and Ethnicity: Contemporary Debates and Perspectives

Posted in Anthologies, Anthropology, Barack Obama, Books, Health/Medicine/Genetics, Media Archive, Social Science on 2015-12-22 04:19Z by Steven

Theories of Race and Ethnicity: Contemporary Debates and Perspectives

Cambridge University Press
January 2015
Paperback ISBN: 9780521154260

Edited by:

Karim Murji, Senior Lecturer in Sociology
The Open University, United Kingdom

John Solomos, Professor of Sociology
University of Warwick, United Kingdom

How have research agendas on race and ethnic relations changed over the past two decades and what new developments have emerged? Theories of Race and Ethnicity provides a comprehensive and cutting-edge collection of theoretically grounded and empirically informed essays. It covers a range of key issues in race and ethnicity studies, such as genetics and race, post-race debates, racial eliminativism and the legacy of Barack Obama, and mixed race identities. The contributions are by leading writers on a range of perspectives employed in studying ethnicity and race, including critical race feminism, critical rationalism, psychoanalysis, performativity, whiteness studies and sexuality. Written in an authoritative yet accessible style, this volume is suitable for researchers and advanced students, offering scholars a survey of the state of the art in the literature, and students an overview of the field.

  • A unique set of views on race and ethnicity by writers committed to advancing scholarship
  • Covers some of the latest issues and debates in the field, including genetics, post-race eliminativism and mixed race identities from a range of perspectives
  • Opening and closing editorial chapters provide a route map of shifts in the field of race and ethnicity studies, and return to some recurring debates to demonstrate how the field changes and has continuing and persisting questions in theorising race and ethnicity

Table of Contents

  • 1. Introduction: situating the present Karim Murji and John Solomos
  • Part I. Debates: Introduction to Part I
    • 2. Race and the science of difference in the age of genomics Sandra Soo-Jin Lee
    • 3. Colour-blind egalitarianism as the new racial norm Charles A. Gallagher
    • 4. Getting over the Obama hope hangover: the new racism in ‘post-racial’ America Eduardo Bonilla-Silva (with Victor E. Ray)
    • 5. Does a recognition of mixed race move us toward post-race? Miri Song
    • 6. Acting ‘as’ and acting ‘as if’: two approaches to the politics of race and migration Leah Bassel
    • 7. Can race be eradicated? The post-racial problematic Brett St Louis
  • Part II. Perspectives: Introduction to Part II
    • 8. Superseding race in sociology: the perspective of critical rationalism Michael Banton
    • 9. Critical race feminism Adrien K. Wing
    • 10. Performativity and ‘raced’ bodies Shirley Tate
    • 11. Racism: psychoanalytic and psycho-social approaches Simon Clarke
    • 12. The sociology of whiteness: beyond good and evil white people Matthew W. Hughey
    • 13. (Sexual) whiteness and national identity: race, class and sexuality in colour-blind France Éric Fassin
    • 14. Racial comparisons, relational racisms: some thoughts on method David Theo Goldberg
  • 15. Conclusion: back to the future Karim Murji and John Solomos
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The Biobank as Political Artifact: The Struggle over Race in Categorizing Genetic Difference

Posted in Articles, Health/Medicine/Genetics, Media Archive, Politics/Public Policy on 2015-11-09 01:43Z by Steven

The Biobank as Political Artifact: The Struggle over Race in Categorizing Genetic Difference

The ANNALS of the American Academy of Political and Social Science
Volume 661, Number 1, September 2015
pages 143-159
DOI: 10.1177/0002716215591141

Sandra Soo-Jin Lee, Senior Research Scholar, Pediatrics
Center for Biomedical Ethics
Stanford University

This article discusses the institutional practices of classifying and creating taxonomies of difference within biobanks (repositories that store a broad range of biological materials, including DNA) and the technical and sociopolitical priorities that ultimately create biobanks. I argue that biobanks operate as political artifacts and that the social circumstances surrounding the development and use of biobanks determine what counts as meaningful difference within human genetic research. The massive collection of human DNA, blood, and tissues is critical to genomic medicine and the development and governance of biobanks structure knowledge that will ultimately bear on how population differences are interpreted and health disparities are framed. Careful consideration of how to avoid the conflation of concepts of race, ethnicity, and nationality with biological differences is necessary to identify effective interventions that will bear positively on health.

Read or purchase the article here.

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Race in Contemporary Medicine

Posted in Anthologies, Books, Health/Medicine/Genetics, Media Archive, Politics/Public Policy, Social Science on 2013-03-23 20:03Z by Steven

Race in Contemporary Medicine

Routledge
2007
208 pages
Hardback ISBN: 978-0-415-41365-7

Edited by:

Sander L. Gilman

With the first patent being granted to “BiDil,” a combined medication that is deemed to be most effective for a specific “race,” African-Americans for a specific form of heart failure, the on-going debate about the effect of the older category of race has been renewed. What role should “race” play in the discussion of genetic alleles and populations today? The new genetics has seemed to make “race” both a category that is seen useful if not necessary, as The New York Times noted recently: “Race-based prescribing makes sense only as a temporary measure.” (Editorial, “Toward the First Racial Medicine,” November 13, 2004) Should one think about “race” as a transitional category that is of some use while we continue to explore the actual genetic makeup and relationships in populations? Or is such a transitional solution poisoning the actual research and practice.

Does “race” present both epidemiological and a historical problem for the society in which it is raised as well as for medical research and practice? Who defines “race”? The self-defined group, the government, the research funder, the researcher? What does one do with what are deemed “race” specific diseases such as “Jewish genetic diseases” that are so defined because they are often concentrated in a group but are also found beyond the group? Are we comfortable designating “Jews” or “African-Americans” as “races” given their genetic diversity? The book answers these questions from a bio-medical and social perspective.

This book was previously published as a special issue of Patterns of Prejudice.

Contents

  • Introduction: On Race and Medicine in Historical Perspective. Sander L. Gilman (Emory)
  • Reflections on Race and the Biologization of Difference. Katya Gibel Azoulay (Grinnell)
  • Against Racial Medicine. Joseph L. Graves, Jr. (North Carolina A&T State University) & Michael R. Rose (University of California, Irvine)
  • Blood and Stories: How Genomics is Rewriting Race, Medicine and Human History. Patricia Wald (Duke)
  • “Why are Genetic and Medical Researchers Accepting a Category Created by Slaveholders?” A Social History of the Reification of “Race” James Downs (Princeton)
  • Eugenics and the Racial Genome: Politics at the Molecular Level. Sharon Snyder and David Mitchell (University of Illinois – Chicago)
  • The Risky Gene: Epidemiology and the Evolution of Race. Philip Alcabes (Hunter College School of Health Sciences)
  • Folk Taxonomy, Prejudice and the Human Genome: Using Heritable Disease as a Jewish Ethnic Marker. Judith S. Neulander (Case Western Reserve University)
  • The price of science without moral constraints: German and American medicine before DNA and Today. Robert E. Pollack (Columbia)
  • Deadly Medicine Today: The Impossible Denials of Racial Medicine. C. Richard King (Washington State University)
  • Biobanks of a “Racial Kind”: Mining for Difference in the New Genetics. Sandra Soo-Jin Lee (Stanford)
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racialization is allowed to proceed unchallenged despite its inherent contradictory claims that race is both biologically meaningful and meaningless.

Posted in Excerpts/Quotes, Health/Medicine/Genetics on 2012-11-15 00:59Z by Steven

What is most disturbing about the paradoxical use of race is the effect it may have on the trajectory of ongoing human genetic variation research. By making the moral argument that race-based therapeutics address injustice in health care, and at the same time maintaining that genetics research will ultimately eliminate the need for racial categories, racialization is allowed to proceed unchallenged despite its inherent contradictory claims that race is both biologically meaningful and meaningless. Rather than serving as a way station, the use of race is allowed to become more fully embedded in the production of scientific knowledge and medical practice.

Sandra Soo-Jin Lee, “Racializing Drug Design: Implications of Pharmacogenomics for Health Disparities,” American Journal of Public Health, Volume 95, Number 12 (December 2005): 2137. http://dx.doi.org/10.2105/AJPH.2005.068676.

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Racializing Drug Design: Implications of Pharmacogenomics for Health Disparities

Posted in Articles, Health/Medicine/Genetics, Media Archive, United States on 2012-11-14 22:57Z by Steven

Racializing Drug Design: Implications of Pharmacogenomics for Health Disparities

American Journal of Public Health
Volume 95, Number 12 (December 2005)
pages 2133-2138
DOI: 10.2105/AJPH.2005.068676

Sandra Soo-Jin Lee, Senior Research Scholar
Stanford Center for Biomedical Ethics
Stanford University

Current practices of using “race” in pharmacogenomics research demands consideration of the ethical and social implications for understandings of group difference and for efforts to eliminate health disparities. This discussion focuses on an “infrastructure of racialization” created by current trajectories of research on genetic differences among racially identified groups, the use of race as a proxy for risk in clinical practice, and increasing interest in new market niches by the pharmaceutical industry.

The confluence of these factors has resulted in the conflation of genes, disease, and race. I argue that public investment in pharmacogenomics requires careful consideration of current inequities in health status and social and ethical concerns over reifying race and issues of distributive justice.

Read the entire article in HTML or PDF format.

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