A Report on Race and Human Biotechnology Osagie K
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PLAYING THE GENE CARD? A Report on Race and Human Biotechnology Osagie K. Obasogie Center for Genetics and Society Preface by Dorothy Roberts PLAYING THE GENE CARD? A Report on Race and Human Biotechnology By Osagie K. Obasogie Center for Genetics and Society Preface by Dorothy Roberts © 2009 Center for Genetics and Society All rights reserved. No part of this publication may be reproduced in whole or in part without the written consent of the Center for Genetics and Society except in brief quotations or summaries in articles and reviews. Center for Genetics and Society 436 14th Street, Suite 700 Oakland, CA 94612 tel 510-625-0819 www.geneticsandsociety.org www.biopoliticaltimes.org www.biopolicywiki.org To download this report: www.thegenecard.org P LAYING THE G ENE C ARD ? A Report on Race and Human Biotechnology C ENTER FOR G ENETI C S AND S O C IETY Contents Executive Summary vii About the Author ix Acknowledgments x Preface by Dorothy Roberts, Kirkland & Ellis Professor of Law, Northwestern Law School xi Race Cards and Gene Cards: A Note About the Report's Title xiv Introduction | Are 21st Century Technologies Reviving 19th Century Theories of Race? 1 How Have New Genetic Theories of Racial Difference Developed? 1 Context: After the Human Genome Project 2 Key Concern: Will Commercial and Forensic Applications Revive Biological Theories of Race? 4 In This Report 5 Sidebar: What Does It Mean to Say that Race Is Not Biologically Significant or that It Is a Social Construction? 3 Chapter 1 | Race-Based Medicine: One Step Forward, Two Steps Back? 7 Pharmacogenomics: The Concept Behind Race-Based Medicines 8 First on the Scene: BiDil 9 Concerns about BiDil 11 Addressing Disparities in Health Through Race-Specific Pharmaceuticals 13 Conclusion: Evaluating Race-Based Medicine 15 Recommendations 15 Sidebars: Major Projects on Human Genetic Variation 8 Why Genetic Variations Matter 10 Top-Down Marketing to the Black Community 11 Contents iii Historical Theories of Race 12 Are More Race-Based Medicines Around the Corner? 13 The Slavery Hypothesis 14 Chapter 2 | Ancestry Tests: Back to the Future? 17 African American Ancestry 17 Context: Population Genetics 18 From Groups and Populations to Individuals 23 Techniques Used by Ancestry Tests 24 Concerns about the Genetic Ancestry Industry 28 Conclusion: Resisting Racial Typologies 30 Recommendations 30 Sidebars: Native Americans and Ancestry Tests 18 Race, Intelligence, and James Watson 19 Bioprospecting and Biopiracy 20 From Race to Population and Back 21 The Business of DNA Ancestry Testing 24 Special Types of DNA 28 Human Genetic Variation—A Work in Progress 29 Chapter 3 | Race and DNA Forensics in the Criminal Justice System 31 How Does It Work? 31 How Reliable Are DNA Forensic Technologies? 32 DNA Databases 33 Cold Hits and Partial Matches 34 Whose DNA Is in These Databases? 36 Sifting DNA Databases to Catch Family Members 39 Predicting Criminality 40 Using DNA to Build Racial Profiles 41 Conclusion: Effects on Minority Communities 43 Recommendations 44 Sidebars: DNA Entrapment? 32 The Scandal in Houston 33 The Innocence Project 33 iv Contents P LAYING THE G ENE C ARD ? A Report on Race and Human Biotechnology C ENTER FOR G ENETI C S AND S O C IETY “The Informer in Your Blood” 34 Juking Stats 35 “The Birthday Problem” and the Limits of Forensic Database Matches 36 Minority Communities and the War on Drugs 38 Civil Liberties and DNA Databases 39 Phrenology, a Classic Pseudo-Science 41 Conclusion 45 Racial Categories in Human Biotechnology Research 45 Race Impact Assessments 46 Responsible Regulation 47 Endnotes 49 About the Center for Genetics and Society 80 Contents v P LAYIN G THE G ENE C ARD ? A Report on Race and Human Biotechnology C ENTER FOR G ENETI C S AND S O C IETY Executive Summary Race has become a prominent focus for human munities echo past discussions in which the sci- biotechnology. Despite often good intentions, ge- ence of biological difference was used to justify netic technologies are being applied in a manner racial hierarchies. that may provide new justification for thinking Although this new research is rapidly evolv- about racial difference and racial disparities in ing and is fraught with controversy, it is being biological terms—as if social categories of race used to develop several commercial and forensic reflect natural or inherent group differences. applications that may give new credence to bio- The Human Genome Project (HGP) and sub- logical understandings of racial difference—often sequent research showed that there is less than 1% with more certainty than is supported by the avail- genetic variation among all humans. Patterns of able evidence. This unrestrained rush to market mating and geographic isolation over thousands of race-specific applications and to use DNA tech- years have conferred genetic signatures to certain nologies in law enforcement can have significant populations. Yet scientists have found little evi- implications for racial minorities: dence to support lay understandings that social ■ Race-based medicines have been promoted categories of race reflect discrete groups of human as a way to reduce inequities in healthcare difference. While HGP findings initially led many and health outcomes. Yet the methodological to conclude that race (as it is commonly conceived assumptions behind them raise as many and used) is not genetically significant, the hope issues as the questionable market incentives that science would promote racial healing has leading to their development. largely not materialized. ■ In fact, trends in life science research have Genetic ancestry tests rely on incomplete sci- shifted the other way. There are increasing efforts entific methods that may lead to overstated to demonstrate the genetic relevance of race by claims. The companies that sell them often mapping this less than 1% of variation onto social suggest that biotechnology can authoritatively categories of race to find genetic explanations for tell us who we are and where we come from. racial disparities and differences. ■ DNA forensics have been used to exonerate Many celebrate these developments as an op- those who have been wrongly convicted and portunity to learn more about who we are and can provide important tools for law enforce- why certain groups are sicker than others. Yet ment. However, some forensic applications of some are struck by the extent to which these new genetic technologies might undermine civil conversations aimed at benefiting minority com- rights—especially in minority communities. Executive Summary vii While each of these applications has been ex- loosely reflect patterns of genetic variation created amined individually, this report looks at them to- by evolutionary forces, and that knowledge about gether to highlight a fundamental concern: that them may ultimately serve important social or commercial incentives and other pressures may medical goals. Yet, given our unfortunate history distort or oversimplify the complex and discor- of linking biological understandings of racial dif- dant relationship between race, population, and ference to notions of racial superiority and inferi- genes. Applications based on such distortions or ority, it would be unwise to ignore the possibility oversimplifications may give undue legitimacy to that 21st century technologies may be used to re- the idea that social categories of race reflect dis- vive long discredited 19th century theories of race. crete biological differences. Advances in human biotechnology hold great The concerns raised in this report should not promise. But if they are to benefit all of us, closer be read as impugning all genetic research that im- attention should be paid to the social risks they plicates social categories of race. There is evidence entail and their particular impacts on minority that socially constructed notions of race may communities. viii Executive Summary P LAYIN G THE G ENE C ARD ? A Report on Race and Human Biotechnology C ENTER FOR G ENETI C S AND S O C IETY About the Author Osagie K. Obasogie, JD, PhD, is taries in outlets such as the Los Ange- Senior Fellow at the Center for Ge- les Times, Boston Globe, San Francisco netics and Society, an Associate Chronicle, and New Scientist. He is a Professor of Law at the University regular contributor to CGS’s blog of California, Hastings in San Fran- Biopolitical Times and former direc- cisco, and a Visiting Scholar at the tor of CGS’s Project on Bioethics, University of California, San Fran- Law, and Society. Obasogie received cisco. His writings have spanned his B.A. with distinction from Yale both academic and public audienc- University, was a Harlan Fiske Stone es, with journal articles in the Yale Scholar and an editor for the National Journal of Law and Feminism, the Black Law Journal at Columbia Law Journal of Law, Medicine, and Ethics, and Trends School, and received his Ph.D. in Sociology from in Pharmacological Sciences along with commen- the University of California, Berkeley. Dorothy Roberts, JD, who of Liberty (1997) and Shattered Bonds: The Color wrote the preface, is the of Child Welfare (2002) and a frequent speaker at Kirkland & Ellis Professor university campuses, social justice organiza- at Northwestern University tions, and other public forums. She serves on School of Law, with joint ap- the boards of directors of the Black Women’s pointments in the Depart- Health Imperative, the National Coalition for ments of African American Child Protection Reform, and Generations Studies and Sociology, and as a faculty fellow of Ahead, and on the Standards Working Group of the Institute for Policy Research. She is the au- the California Institute for Regenerative Medi- thor of the award-winning books Killing the cine. She is writing a book on the politics of Black Body: Race, Reproduction, and the Meaning race-based technologies. About the Author ix Acknowledgments I am deeply appreciative of the thoughtful and this document, to Jonathan Peck of Dovetail supportive environment provided by the Center Publishing Services for designing the report’s for Genetics and Society while drafting this re- layout, and to John Sullivan of Visual Strategies port.