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2.
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GravesJ. L.Jr., The Emperor's New Clothes: Biological Theories of Race at the Millennium (New Brunswick, NJ: Rutgers University Press, 2003); CooperR.KaufmanJ. S., and WardR., “Race and Genomics,”New England Journal of Medicine348 (2003): 1166–70.
4.
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See, e.g., SarichV. and MieleF., Race: The Reality of Human Differences (Boulder, CO: Westview Press, 2004); HackingI., “Why Race Still Matters,”Daedalus134 (2005): 102–16; RischN., “Categorization of Humans in Biomedical Research: Genes, Race, and Disease,”Genome Biology3: 1–12; RosenbergN. A., “Genetic Structure of Human Populations,”Science298 (2002): 2381–85.
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BonhamV. L.Warchauer-BakerE., and CollinsF. S., “Race and Ethnicity in the Genome Era: The Complexity of the Constructs,”American Psychologist60 (2005): 9–15; RoyalC. D. M. and DunstonG. M., “Changing the Paradigm from ‘Race’ to Human Genome Variation,”Nature Genetics36 (2004): S5–S7; StevensJ., “Racial Meanings and Scientific Methods: Changing Policies for NIH-Sponsored Publications Reporting Human Variation,”Journal of Health Politics, Policy & Law28 (2003): 1033–87.
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Bonilla-SilvaE., Racism Without Racists: Color-Blind Racism and the Persistence of Racial Inequality in the United States (Lanham, MD: Rowman & Littlefield, 2003); BrownM. K., WhiteWashing Race: The Myth of a Color-Blind Society (Berkeley, CA: University of California Press, 2003); OmiM. and WinantH., Racial Formation in the United States: From the 1960s to the 1990s (New York: Routledge, 1994).
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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. RotimiC., “Are Medical and Nonmedical Uses of Large-Scale Genomic Markers Conflating Genetics and ‘Race’?”Nature Genetics36 (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.
10.
JasanoffS., “Law's Knowledge: Science for Justice in Legal Settings,”American Journal of Public Health95 (2005): S49–58; JasanoffS., “Ordering Knowledge, Ordering Society,” in JasanoffS., ed., States of Knowledge: The Co-Production of Science and Social Order (London: Routledge, 2004): 13–45.
11.
KahnJ., “How A Drug Becomes ‘Ethnic’: Law, Commerce, and the Production of Racial Categories in Medicine,”Yale Journal of Health Policy, Law & Ethics4 (2004): 1–46; LillquistE. and SullivanC. A., “The Law and Genetics of Racial Profiling in Medicine,”Harvard Civil Rights-Civil Liberties Law Review39 (2004): 391–483; LillquistE. and SullivanC. A., “Legal Regulations on the Use of Race in Medical Research,”Journal of Law, Medicine & Ethics34, no. 3 (2006): 535–551.
12.
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).
13.
Id.
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RobbinA., “Classifying Racial and Ethnic Group Data in the United States: The Politics of Negotiation and Accommodation,”Journal of Government Information27 (2000): 129–56.
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U.S. Department of Health and Human Services, “Policy Statement on Inclusion of Race and Ethnicity in HHS Data Collection Activities,”supra note 12.
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.
Stevens, supra note 6; KahnJ. (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).
21.
See, e.g., Rotimi, supra note 9; Royal and Dunston, supra note 6; CooperKaufman and Ward, supra note 3; Keita, supra note 1; FosterM. W. and SharpR.R., “Beyond Race: Towards a Whole-Genome Perspective on Human Populations and Genetic Variation,”Nature Reviews Genetics5 (2004): 790–96.
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Kahn, supra note 20.
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EpsteinS., “Bodily Differences and Collective Identities: The Politics of Gender and Race in Biomedical Research in the United States,”Body & Society10 (2004): 183–203.
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KingP. A., “Race, Justice, and Research,” in KahnJ. P.MastroianniA. C., and SugarmanJ., eds., Beyond Consent: Seeking Justice in Research (New York: Oxford University Press, 1998): 88–110, at 91. See also MinowM., Making All the Difference: Inclusion, Exclusion, and American Law (Ithaca, NY: Cornell University Press, 1990); OmiM., “Racial Identity and the State: The Dilemmas of Classification,”Law & Inequality Journal15 (1997): 7–24.
Kahn, supra note 11; BlocheG. M., “Market Incentives and Regulatory Constraints: Racial and Ethnic Categories in Pharmaceutical Research,”Journal of Law, Medicine & Ethics34, no. 3 (2006): 555–558; BlocheG. M., “Race-Based Therapeutics,”New England Journal of Medicine351 (2004): 2035–37; BowserR., “Race as a Proxy for Drug Response: The Dangers and Challenges of Ethnic Drugs,”DePaul Law Review53 (2004): 1111–26.
27.
Kahn, supra note 11, at 3.
28.
Diamond v. Chakrabarty, 447 U.S. 303 (1980).
29.
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.
45 C.F.R. 46 (2005); EmanuelE. J.WendlerD. and GradyC., “What Makes Clinical Research Ethical?”JAMA283 (2000): 2701–2711.
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BellJ.WhitonJ. and ConnellyS., 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).
35.
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).
Grutter v. Bollinger, 539 U.S. 306 (2003), quoting Richmond v. J.A. Croson, 488 U.S. 469, 493 (1989).
42.
Id.
43.
Lillquist and Sullivan (2004), supra note 11, at 466–479.
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Id., at 461–465.
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Id., at 474–477.
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WatersM. D., The Initiative and Referendum Almanac (Durham, N.C.:Carolina Academic Press, 2003).
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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).
48.
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.
49.
Grutter v. Bolinger, supra note 41; HarrisC. I., “Whiteness as Property,”Harvard Law Review106 (1993): 1707–1791.
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GuinierL., The Tyranny of the Majority: Fundamental Fairness in Representative Democracy (New York: Free Press, 1994); Gotanda, supra note 50; LawrenceC. R., “The Id, the Ego, and Equal Protection: Reckoning with Unconscious Racism,”Stanford Law Review39 (1987): 317–388.
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Delgado and Stefancic, supra note 51.
56.
See supra note 7.
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AppiahA., “Racism,” in GoldbergD. T., ed., Anatomy of Racism (Minneapolis, MN: University of Minnesota Press, 2000): 3–16; GilroyP., Against Race: Imagining Political Culture Beyond the Color Line (Cambridge, MA: Harvard University Press, 2000).
58.
Lilliquist and Sullivan, “The Law and Genetics of Racial Profiling in Medicine,”supra note 11.
59.
See DusterT., “The Lessons of History: How Race and Ethnicity Have Figured in Biomedical Research,”Journal of Law, Medicine & Ethics34, no. 3 (2006): 487–498; Duster, supra note 2; Graves, supra note 3.
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DusterT., Backdoor to Eugenics (New York: Routledge, 1990); RobertsD. E., “The Genetic Tie,”University of Chicago Law Review62 (1995): 209–73.
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Lurie, supra note 8.
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63.
OssorioP. and DusterT., “Race and Genetics: Controversies in Biomedical, Behavioral, and Forensic Science,”American Psychologist60 (2005): 115–28, at 116.
64.
DusterT., “Buried Alive: The Concept of Race in Science,”Chronicle of Higher Education, September 14, 2001: at B12.
65.
Royal and Dunston, supra note 6.
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LynchJ. and SmithDavey G., “A Life Course Approach to Chronic Disease Epidemiology,”Annual Review of Public Health26 (2005): 1–35; DrakeA. J. and WalkerB. R., “The Intergenerational Effects of Fetal Programming: Non-Genomic Mechanisms for the Inheritance of Low Birth Weight and Cardiovascular Risk,”Journal of Endocrinology180 (2004): 1–16; McDadeT. W., “Status Incongruity in Samoan Youth: A Biocultural Analysis of Cultural Change, Stress, and Immune Function,”Medical Anthropology Quarterly16 (2002): 123–50.
67.
Grutter v. Bollinger, 539 U.S. 306 (2003), quoting Richmond v. J.A. Croson, 488 U.S. 469, 510 (1989).
68.
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.