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Legal Constraints on the Use of Race in Biomedical Research: Toward a Social Justice Framework

Published online by Cambridge University Press:  01 January 2021

Dorothy E. Roberts
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Extract

The scientific validity of racial categories has been the subject of debate among population geneticists, evolutionary biologists, and physical anthropologists for several decades. After World War II, the rejection of eugenics, which had supported sterilization laws and other destructive programs in the United States, generated a compelling critique of the biological basis of race. The classification of human beings into distinct biological “races” is a relatively recent invention propped up by deeply flawed evidence and historically providing the foundation of racist ideology and inequities of power. Social scientists’ conclusion that race is socially constructed was confirmed by genomic studies of human variation, including the Human Genome Project, showing high levels of genetic similarity within the human species. Some scholars came to believe that the science of human genetic diversity would replace race as the preeminent means of grouping people for scientific purposes.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 34 , Issue 3 , Fall 2006 , pp. 526 - 534
Copyright
Copyright © American Society of Law, Medicine and Ethics 2006

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References

Reardon, J., Race to the Finish: Identity and Governance in an Age of Genomics (Princeton, NJ: Princeton University Press, 2005); Keita, S. O. Y. and Kittles, R. A., “The Persistence of Racial Thinking and the Myth of Racial Divergence,” American Anthropologist 99 (1997): 534–44.Google Scholar
Kevles, D., In the Name of Eugenics: Genetics and the Uses of Human Heredity (Cambridge, MA: Harvard University Press, 1985); Gould, S. J., The Mismeasure of Man (New York: Norton, 1981); Duster, T., “Race and Reification in Science,” Science 307 (2005): 1050–51.Google Scholar
Graves, J. L. Jr., The Emperor's New Clothes: Biological Theories of Race at the Millennium (New Brunswick, NJ: Rutgers University Press, 2003); Cooper, R. Kaufman, J. S., and Ward, R., “Race and Genomics,” New England Journal of Medicine 348 (2003): 1166–70.Google Scholar
Stepan, N., The Idea of Race in Science (Hamden, CT: Archon Books, 1982).Google Scholar
See, e.g., Sarich, V. and Miele, F., Race: The Reality of Human Differences (Boulder, CO: Westview Press, 2004); Hacking, I., “Why Race Still Matters,” Daedalus 134 (2005): 102–16; Risch, N. et al., “Categorization of Humans in Biomedical Research: Genes, Race, and Disease,” Genome Biology 3: 1–12; Rosenberg, N. A. et al., “Genetic Structure of Human Populations,” Science 298 (2002): 2381–85.Google Scholar
Bonham, V. L. Warchauer-Baker, E., and Collins, F. S., “Race and Ethnicity in the Genome Era: The Complexity of the Constructs,” American Psychologist 60 (2005): 9–15; Royal, C. D. M. and Dunston, G. M., “Changing the Paradigm from ‘Race’ to Human Genome Variation,” Nature Genetics 36 (2004): S5–S7; Stevens, J., “Racial Meanings and Scientific Methods: Changing Policies for NIH-Sponsored Publications Reporting Human Variation,” Journal of Health Politics, Policy & Law 28 (2003): 1033–87.CrossRefGoogle Scholar
Bonilla-Silva, E., Racism Without Racists: Color-Blind Racism and the Persistence of Racial Inequality in the United States (Lanham, MD: Rowman & Littlefield, 2003); Brown, M. K. et al., WhiteWashing Race: The Myth of a Color-Blind Society (Berkeley, CA: University of California Press, 2003); Omi, M. and Winant, H., Racial Formation in the United States: From the 1960s to the 1990s (New York: Routledge, 1994).Google Scholar
Lurie, N., “Health Disparities – Less Talk, More Action”, New England Journal of Medicine 353 (2005): 727–29.CrossRefGoogle Scholar
For example, the trial to test the efficacy of BiDil in treating heart failure in African-Americans was cosponsored by the Association of Black Cardiologists and supported by the National Medical Association and members of the Black Congressional Caucus. Rotimi, C., “Are Medical and Nonmedical Uses of Large-Scale Genomic Markers Conflating Genetics and ‘Race’?” Nature Genetics 36 (2004): S43–S47. The sometimes conflicting perspectives of African-American researchers, patients, and advocates, as well as other people of color, on the proper use of race in biomedical research are crucial to developing a socially just approach to this issue. While I hope to explore these perspectives in future scholarship, an extended exploration is beyond the scope of this article.CrossRefGoogle Scholar
Jasanoff, S., “Law's Knowledge: Science for Justice in Legal Settings,” American Journal of Public Health 95 (2005): S49–58; Jasanoff, S., “Ordering Knowledge, Ordering Society,” in Jasanoff, S., ed., States of Knowledge: The Co-Production of Science and Social Order (London: Routledge, 2004): 13–45.CrossRefGoogle Scholar
Kahn, J., “How A Drug Becomes ‘Ethnic’: Law, Commerce, and the Production of Racial Categories in Medicine,” Yale Journal of Health Policy, Law & Ethics 4 (2004): 1–46; Lillquist, E. and Sullivan, C. A., “The Law and Genetics of Racial Profiling in Medicine,” Harvard Civil Rights-Civil Liberties Law Review 39 (2004): 391–483; Lillquist, E. and Sullivan, C. A., “Legal Regulations on the Use of Race in Medical Research,” Journal of Law, Medicine & Ethics 34, no. 3 (2006): 535–551.Google Scholar
U.S. Department of Health and Human Services, “Policy Statement on Inclusion of Race and Ethnicity in HHS Data Collection Activities” (1997), available at <http://aspe.os.dhhs.gov/datacncl/racerpt/appendg.htm> (last visited June 28, 2006).+(last+visited+June+28,+2006).>Google Scholar
Id.Google Scholar
Robbin, A., “Classifying Racial and Ethnic Group Data in the United States: The Politics of Negotiation and Accommodation,” Journal of Government Information 27 (2000): 129–56.CrossRefGoogle Scholar
U.S. Department of Health and Human Services, “Policy Statement on Inclusion of Race and Ethnicity in HHS Data Collection Activities,” supra note 12.Google Scholar
National Institutes of Health, “NIH Policy and Guidelines on the Inclusion of Women and Minorities as Subjects in Clinical Research – Amended October, 2001,” available at <http://grants.nih.gov/grants/funding/women_min/guidelines_amended_10_2001.htm> (last visited July 7, 2006) (emphasis added).+(last+visited+July+7,+2006)+(emphasis+added).>Google Scholar
Healthy People 2010, “Healthy People: What Are Its Goals?” available at <http://www.health.gov/healthypeople/About/goals.htm> (last visited June 28, 2006).+(last+visited+June+28,+2006).>Google Scholar
CDC, “Racial and Ethnic Approaches to Community Health: Goals for 2010,” available at <http://www.cdc.gov/reach2010/goals.htm> (last visited July 7, 2006). The CDC lists six racial and ethnic minority populations who are experiencing health disparities and states that “REACH grantees are using local data to implement interventions that address one or more of the six priority areas and targets one or more of the racial and ethnic minority groups mentioned above.” Id.+(last+visited+July+7,+2006).+The+CDC+lists+six+racial+and+ethnic+minority+populations+who+are+experiencing+health+disparities+and+states+that+“REACH+grantees+are+using+local+data+to+implement+interventions+that+address+one+or+more+of+the+six+priority+areas+and+targets+one+or+more+of+the+racial+and+ethnic+minority+groups+mentioned+above.”+Id.>Google Scholar
CDC, “Racial and Ethnic Approaches to Community Health: 2005 Community Examples,” available at <http://www.cdc.gov/reach2010/community_examples/index.htm> (last visited July 7, 2006).+(last+visited+July+7,+2006).>Google Scholar
Stevens, , supra note 6; Kahn, J. (Principal Investigator), “Colliding Categories: Haplotypes, Race, and Ethnicity,” Grant # R01 HG002818, National Human Genome Research Institute, The ELSI Research Program Abstracts and Activities Data Base, available at <http://www.genome.gov/page.cfm?pageID=17515632#beginSearch> (last visited July 7, 2006).+(last+visited+July+7,+2006).>Google Scholar
See, e.g., Rotimi, , supra note 9; Royal, and Dunston, , supra note 6; Cooper, Kaufman, and Ward, , supra note 3; Keita, et al., supra note 1; Foster, M. W. and Sharp, R.R., “Beyond Race: Towards a Whole-Genome Perspective on Human Populations and Genetic Variation,” Nature Reviews Genetics 5 (2004): 790–96.Google Scholar
Kahn, , supra note 20.Google Scholar
Epstein, S., “Bodily Differences and Collective Identities: The Politics of Gender and Race in Biomedical Research in the United States,” Body & Society 10 (2004): 183–203.CrossRefGoogle Scholar
King, P. A., “Race, Justice, and Research,” in Kahn, J. P. Mastroianni, A. C., and Sugarman, J., eds., Beyond Consent: Seeking Justice in Research (New York: Oxford University Press, 1998): 88–110, at 91. See also Minow, M., Making All the Difference: Inclusion, Exclusion, and American Law (Ithaca, NY: Cornell University Press, 1990); Omi, M., “Racial Identity and the State: The Dilemmas of Classification,” Law & Inequality Journal 15 (1997): 7–24.Google Scholar
Evelyn, B. et al., “Participation of Racial/Ethnic Groups in Clinical Trials and Race-Related Labeling: A Review of New Molecular Entities Approved 1995–1999” (2001), available at <http://www.fda.gov/cder/reports/race_ethnicity/race_ethnicity_report.htm> (last visited June 28, 2006).+(last+visited+June+28,+2006).>Google Scholar
Kahn, , supra note 11; Bloche, G. M., “Market Incentives and Regulatory Constraints: Racial and Ethnic Categories in Pharmaceutical Research,” Journal of Law, Medicine & Ethics 34, no. 3 (2006): 555–558; Bloche, G. M., “Race-Based Therapeutics,” New England Journal of Medicine 351 (2004): 2035–37; Bowser, R., “Race as a Proxy for Drug Response: The Dangers and Challenges of Ethnic Drugs,” DePaul Law Review 53 (2004): 1111–26.Google Scholar
Kahn, , supra note 11, at 3.Google Scholar
Diamond v. Chakrabarty, 447 U.S. 303 (1980).Google Scholar
Id., at 316–317. In contrast, the Canadian court in Harvard College v. Canada, 2002 SCC 76, denied the patentability of higher life forms without express authorization from Parliament.Google Scholar
Kahn, , supra note 11, at 31.Google Scholar
Kahn, , supra note 11, at 32.Google Scholar
The President's Council on Bioethics, Monitoring Stem Cell Research (January 2004), available at <http://bioethics.gov/reports/stemcell/chapter2,html> (last visited July 8, 2006). (last visited July 8, 2006).' href=https://scholar.google.com/scholar?q=The+President's+Council+on+Bioethics,+Monitoring+Stem+Cell+Research+(January+2004),+available+at++(last+visited+July+8,+2006).>Google Scholar
45 C.F.R. 46 (2005); Emanuel, E. J. Wendler, D. and Grady, C., “What Makes Clinical Research Ethical?” JAMA 283 (2000): 2701–2711.CrossRefGoogle Scholar
Bell, J. Whiton, J. and Connelly, S., Evaluation of NIH Implementation of Section 491 of the Public Health Service Act, Mandating a Program of Protection for Research Subjects (June 15, 1998), available at <http://www.hhs.gov/ohrp/policy/hsp_fnal_rpt.pdf> (last visited July 8, 2006).+(last+visited+July+8,+2006).>Google Scholar
The President's Council on Bioethics, supra note 32. The original provision, introduced by Representative Jay Dickey, is in § 128 of the Balanced Budget Downpayment Act, I, Pub. L. No. 104-99, 110 Stat. 26 (1996).Google Scholar
NIH, “NIH's Role in Federal Policy: Stem Cell Research,” Stem Cell Information, available at <http://.stemcells.nih.gov/policy/NIHFedPolicy.asp> (last visited July 8, 2006). (last visited July 8, 2006).' href=https://scholar.google.com/scholar?q=NIH,+“NIH's+Role+in+Federal+Policy:+Stem+Cell+Research,”+Stem+Cell+Information,+available+at++(last+visited+July+8,+2006).>Google Scholar
Lillquist, and Sullivan, , supra note 11.Google Scholar
42 U.S.C.A. § 2000d (2000).Google Scholar
42 U.S.C.A. § 1981 (2006).Google Scholar
U.S. CONST. amend. XIV, § 1.Google Scholar
Grutter v. Bollinger, 539 U.S. 306 (2003), quoting Richmond v. J.A. Croson, 488 U.S. 469, 493 (1989).Google Scholar
Id.Google Scholar
Lillquist, and Sullivan, (2004), supra note 11, at 466–479.Google Scholar
Id., at 461–465.Google Scholar
Id., at 474–477.Google Scholar
Waters, M. D., The Initiative and Referendum Almanac (Durham, N.C.:Carolina Academic Press, 2003).Google Scholar
Cal. Sec'y of State, Official Voter Information Guide 45, § 32(a) (2003); see also Proposition 54 to amend Cal. Const. art. I (2003), available at <http://vote2003.ss.ca.gov/voterguide/english.pdf> (last visited Juy 7, 2006). (last visited Juy 7, 2006).' href=https://scholar.google.com/scholar?q=Cal.+Sec'y+of+State,+Official+Voter+Information+Guide+45,+§+32(a)+(2003);+see+also+Proposition+54+to+amend+Cal.+Const.+art.+I+(2003),+available+at++(last+visited+Juy+7,+2006).>Google Scholar
Suppose, for example, a cardiologist prescribes BiDil as the only suitable therapy for an African-American patient and does not consider alternative therapies solely because of the patient's race. The patient may have a tort claim against the cardiologist if she is harmed by the cardiologist's failure to prescribe more effective medication on the basis of race alone.Google Scholar
Grutter v. Bolinger, supra note 41; Harris, C. I., “Whiteness as Property,” Harvard Law Review 106 (1993): 1707–1791.CrossRefGoogle Scholar
Gotanda, N., “A Critique of ‘Our Constitution is Colorblind’,” Stanford Law Review 44 (1991): 1–68.CrossRefGoogle Scholar
Delgado, R. and Stefancic, J., Critical Race Theory: An Introduction (New York: New York University Press, 2001).Google Scholar
Bell, D. A., “Brown v. Board of Education and the Interest Convergence Dilemma,” Harvard Law Review 93 (1980): 581–533.CrossRefGoogle Scholar
Guinier, L., The Tyranny of the Majority: Fundamental Fairness in Representative Democracy (New York: Free Press, 1994); Gotanda, , supra note 50; Lawrence, C. R., “The Id, the Ego, and Equal Protection: Reckoning with Unconscious Racism,” Stanford Law Review 39 (1987): 317–388.Google Scholar
Lopez, Haney I., White by Law: The Legal Construction of Race (New York: New York University Press, 1996).Google Scholar
Delgado, and Stefancic, , supra note 51.Google Scholar
See supra note 7.Google Scholar
Appiah, A., “Racism,” in Goldberg, D. T., ed., Anatomy of Racism (Minneapolis, MN: University of Minnesota Press, 2000): 3–16; Gilroy, P., Against Race: Imagining Political Culture Beyond the Color Line (Cambridge, MA: Harvard University Press, 2000).Google Scholar
Lilliquist, and Sullivan, , “The Law and Genetics of Racial Profiling in Medicine,” supra note 11.Google Scholar
See Duster, T., “The Lessons of History: How Race and Ethnicity Have Figured in Biomedical Research,” Journal of Law, Medicine & Ethics 34, no. 3 (2006): 487–498; Duster, , supra note 2; Graves, , supra note 3.CrossRefGoogle Scholar
Duster, T., Backdoor to Eugenics (New York: Routledge, 1990); Roberts, D. E., “The Genetic Tie,” University of Chicago Law Review 62 (1995): 209–73.Google Scholar
Lurie, , supra note 8.Google Scholar
Collins, F. S., “What We Do and Don't Know about ‘Race,’ ‘Ethnicity,’ Genetics, and Health at the Dawn of the Genome Era,” Nature Genetics 36 (2004): S13–S1; Mays, V. M. et al., “Classification of Race and Ethnicity: Implications for Public Health,” Annual Review of Public Health 24 (2003): 83–110; Bhopal, R. and Donaldson, L., “White, European, Western, Caucasian, or What?: Inappropriate Labeling in Research on Race, Ethnicity, and Health,” American Journal of Public Health 88 (1998): 1303–07.CrossRefGoogle Scholar
Ossorio, P. and Duster, T., “Race and Genetics: Controversies in Biomedical, Behavioral, and Forensic Science,” American Psychologist 60 (2005): 115–28, at 116.CrossRefGoogle Scholar
Duster, T., “Buried Alive: The Concept of Race in Science,” Chronicle of Higher Education, September 14, 2001: at B12.Google Scholar
Royal, and Dunston, , supra note 6.Google Scholar
Lynch, J. and Smith, Davey G., “A Life Course Approach to Chronic Disease Epidemiology,” Annual Review of Public Health 26 (2005): 1–35; Drake, A. J. and Walker, B. R., “The Intergenerational Effects of Fetal Programming: Non-Genomic Mechanisms for the Inheritance of Low Birth Weight and Cardiovascular Risk,” Journal of Endocrinology 180 (2004): 1–16; McDade, T. W., “Status Incongruity in Samoan Youth: A Biocultural Analysis of Cultural Change, Stress, and Immune Function,” Medical Anthropology Quarterly 16 (2002): 123–50.CrossRefGoogle Scholar
Grutter v. Bollinger, 539 U.S. 306 (2003), quoting Richmond v. J.A. Croson, 488 U.S. 469, 510 (1989).Google Scholar
The First Amendment limits but does not preclude the state's ability to restrict speech related to race in biomedical research. See Lillquist, and Sullivan, , “The Law and Genetics of Racial Profiling in Medicine,” supra note 11, at 448–450.Google Scholar