Producing Knowledge about Racial Differences: Tracing Scientists' Use of “Race” and “Ethnicity” from Grants to Articles

Halfmann D. Rude J. Ebert K. , “The Biomedical Legacy in Minority Health Policy-Making, 1975–2002,” Research in the Sociology of Health Care 23, no. 11 (2005): 245–275; Kaufman J. Cooper R. , “Use of Racial and Ethnic Identity in Medical Evaluations and Treatments,” in Whitmarsh I. Jones D. , eds., What's the Use of Race?: Modern Governance and the Biology of Difference (Cambridge: MIT Press, 2010): At 187–206; Outram S. Ellison G. , “Arguments against the Use of Racialized Categories as Genetic Variables in Biomedical Research: What Are They, and Why Are They Being Ignored?” in Whitmarsh I. Jones D. , eds., What's the Use of Race?: Modern Governance and the Biology of Difference (Cambridge, MIT Press, 2010): At 91–124.

Fujimura J. Duster T. Rajagopalan R. , “Introduction: Race, Genetics, and Disease: Questions of Evidence, Matters of Consequence,” Social Studies of Science 38, no. 5 (2008): 643–656; Fullwiley D. , “The Molecularization of Race: Institutionalizing Racial Difference in Pharmacogenetics Practice,” Science as Culture 16, no. 1 (2007): 1–30; Fullwiley D. , “The Biologistical Construction of Race: ‘Admixture’ Technology and the New Genetic Medicine,” Social Studies of Science 38, no. 5 (2008): 695–735; Shim J. K. , “Constructing ‘Race’ across the Science–Lay Divide: Racial Formation in the Epidemiology and Experience of Cardiovascular Disease,” Social Studies of Science 35, no. 3 (2005): 405–436.

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Fujimura J. Rajagopalan R. , “Different Differences: The Use of “Genetic Ancestry” Versus Race in Biomedical Human Genetic Research,” Social Studies of Science 41, no. 1 (2011): 5–30.

Id., at 3.

Smart A. Tutton R. Martin P. Ellison G. T. Ashcroft R. , “The Standardization of Race and Ethnicity in Biomedical Science Editorials and UK Biobanks,” Social Studies of Science 38, no. 3 (2008): 407–423.

ICMJE, “Uniform Requirements for Manuscripts Submitted to Biomedical Journals,” New England Journal of Medicine 336, no. 4 (1997): 309–315; Editorial, “Census, Race and Science,” Nature Genetics 24, no. 2 (2000): 97–98.

See Fujimura Duster Rajagopalan supra note 2; Duster T. , “Race and Reification in Science,” Science 307, no. 5712 (2005): 1050–1051; Duster T. , “The Molecular Reinscription of Race,” Patterns of Prejudice 40, nos. 4/5 (2006): 427–441; Duster T. , “Lessons from History: Why Race and Ethnicity Have Played a Major Role in Biomedical Research,” Journal of Law, Medicine & Ethics 34, no. 3 (2006): 487–496; Ossorio P. Duster T. , “Race and Genetics - Controversies in Biomedical, Behavioral, and Forensic Sciences,” American Psychologist 60, no. 1 (2005): 115–128; see Kaufman Cooper , supra note 1; Krieger N. , “The Science and Epidemiology of Racism and Health: Racial/Ethnic Categories, Biological Expressions of Racism, and the Embodiment of Inequality – An Ecosocial Perspective,” in Whitmarsh I. Jones D. , eds., What's the Use of Race?: Modern Governance and the Biology of Difference (Cambridge, MIT Press, 2010): At 225–258.

See Halfmann Rude Ebert , supra note 1.

National Science Board, Science and Engineering Indicators 2008, Vol. 1, National Science Foundation (NSB 08–01), 2008.

National Institutes of Health, NIH Guidelines on the Inclusion of Women and Minorities as Subjects in Clinical Research (1994), available at <http://grants.nih.gov/grants/guide/notice-files/not94–100.html> (last visited July 24, 2013).

Id., at 5–14.

National Institutes of Health (2001) “NIH Policy on Reporting Race and Ethnicity Data: Subjects in Clinical Research,” available at <http://grants.nih.gov/grants/guide/notice-files/NOT-OD-01-053.html> (last visited July 24, 2013).

Epstein S. , Inclusion: The Politics of Difference in Medical Research (Chicago: University of Chicago Press, 2007).

Id., at 18.

Knerr S. Wayman D. Bonham V. L. , “Inclusion of Racial and Ethnic Minorities in Genetic Research: Advance the Spirit by Changing the Rules?” Journal of Law, Medicine & Ethics 39, no. 3 (2011): 502–512; Hunt L. Megyesi M. , “Genes, Race and Research Ethics: Who's Minding the Store?” Journal of Medical Ethics 34, no. 6 (2008): 495–500; Corbie-Smith G. M. Durant R. W. St. George D. M. , “Investigators' Assessment of NIH Mandated Inclusion of Women and Minorities in Research,” Contemporary Clinical Trials 27, no. 6 (2006): 571–579.

NIH Office of Research Information Systems (ORIS)/Office of Statistical Analysis and Reporting (OSAR), “Grants: Competing Applications, Awards, Success Rates, and Total Funding, by IC, Mechanism, Activity Code, and Funding Source,” Table 205-C, 2012, available at <http://report.nih.gov/frrs/index.aspx?refUrl=index&sS=search&sI=&sP=&sM=&sA=&sD=&sV=&sY=2012> (last visited July 30, 2013).

Prior to eliminating grants that produced just one related article, we ran the same analysis using one article rather than two with essentially identical results. As a result, we can state with confidence that eliminating those grants with just one related publication did not change the substance of our findings.

Although there is no fee for submitting a Freedom of Information Act request, the NCI charged fees associated with photocopying and handling. The NCI also took nearly a year to fulfill the requests.

We determined whether an article was “related” to the grant aims by looking at whether it addressed the main research question or aim (if articulated) of the grant. We also considered articles “related” if they addressed some factor discussed as an important control or possible interaction. In general, “related” articles also had to use at least some of the proposed study population. In a few cases, articles were published that appeared to use completely different study populations but addressed a related topic. Seven grants in our sample had 2 related articles. Seven had 3 related articles. Twenty-two grants had 4–7 related articles. Twenty-four grants had 8–15 related articles, and 10 had 16 or more related articles. The highest number of related articles in our sample was 185. We read the abstracts of all articles associated with each grant to ensure we were not excluding significant discussions of race and ethnicity, but only included the first two related articles in our analysis.

Rebbeck T. R. , Grant Application: Molecular Epidemiology of Prostate Cancer, National Cancer Institute, Grant Number 1R01CA085074–01(1999).

Jaffe J. M. Malkowicz S. B. Walker A. H. MacBride S. Peschel R. Tomaszewski J. Van Arsdalen K. Wein A. J. Rebbeck T. R. , “Association of SRDA2 Genotype and Pathological Characteristics of Prostate Tumors,” Cancer Research 60, no. 6 (2000): 1626–1630.

Rebbeck T. R. Walker A. H. Zeigler-Johnson C. Weisburg S. Martin A. Nathanson K. L. Wein A. J. Malkowicz S. B. , “Association of HPC2/ELAC2 Genotypes and Prostate Cancer,” American Journal of Human Genetics 67, no. 4 (2000): 1014–1019.

Henner W. D. , Grant Application: Androgen Pathway Polymorphisms and Prostate Cancer Risk, National Cancer Institute, Grant Number: 1R01CA072792–01 (1997).

Henner W. D. Evans A. J. Hough K. M. Harris E. L. Lowe B. A. Beer T. M. , “Association of Codon 72 Polymorphism of p53 with Lower Prostate Cancer Risk,” The Prostate 49, no. 4 (2001): 263–266.

Beer T. M. Evans A. J. Hough K. M. Lowe B. A. McWilliams J. E. Henner W. D. , “Polymorphisms of GSTP1 and Related Genes and Prostate Cancer Risk,” Prostate Cancer and Prostatic Diseases 5, no. 1 (2002): 22–27.

See Henner , supra note 30.

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Kolonel L. , Grant Application: Multiethnic Minority Cohort Study of Diet and Cancer, National Cancer Institute, Grant Number: 1R01CA054281–01A2 (1993).

Nöthlings U. Yamamoto J. Wilkens L. R. Murphy S. P. Park S.-Y. Henderson B. E. Kolonel L. N. Marchand L. , “Meat and Heterocyclic Amine Intake, Smoking, NAT1 and NAT2 Polymorphisms, and Colorectal Cancer Risk in the Multiethnic Cohort Study,” Cancer Epidemiology, Biomarkers & Prevention 18, no. 7 (2009): 2098–2106, at 2103.

Godley P. , Grant Application: Race, Fatty Acid Exposure, and Risk of Prostate Cancer, National Cancer Institute, Grant Number: R01CA055760–01 (1991).

Id., at 49.

Godley P. Campbell M. K. Miller C. Gallagher P. Martinson F. E. Mohler J. L. Sandler R. S. , “Correlation between Biomarkers of Omega-3 Fatty Acid Consumption and Questionnaire Data in African American and Caucasian United States Males with and without Prostatic Carcinoma,” Cancer Epidemiology, Biomarkers & Prevention 5, no. 2 (1996): 115–119, at 117.

Byers T. E. , Grant Application: Preeclampsia and Risk of Breast and Endometrial Cancer, National Cancer Institute, Grant Number 1R03CA078203–01 (1998).

Innes K. Byers T. Schymura M. , “Birth Characteristics and Subsequent Risk for Breast Cancer in Very Young Women,” American Journal of Epidemiology 152, no. 12 (2000): 1121–1128.

Id., at 1126.

See, for example, ICMJE, supra note 13; Nature Genetics Editorial, supra note 13.

See Lee , supra note 9.

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Bolnick D. , “Individual Ancestry Inference and the Reification of Race as a Biological Phenomenon,” in Koenig B. Lee S. Richardson S. , eds., Revisiting Race in a Genomic Age (New Brunswick: Rutgers University Press, 2008): At 70–88; Fullwiley D. , “The Molecularization of Race: U.S. Health Institutions, Pharmacogenetics Practice, and Public Science after the Genome,” in Koenig B. Lee S. Richardson S. , eds., Revisiting Race in a Genomic Age (New Brunswick: Rutgers University Press): 149–171.

See Smart , supra note 12.

See Epstein , supra note 5; Shim , supra note 2; id. ( Smart ).

See Friedman , supra note 3.

Braun L. , “Reifying Human Difference: Race, Genetics, and Health Disparities,” International Journal of Health Services 36, no. 3 (2006): 557–573; Stevens J. , “Racial Meanings and Scientific Methods: Changing Policies for NIH-Sponsored Publications Reporting Human Variation,” Journal of Health Politics, Policy, and Law 28 (2003): 1033–1088.

See ICMJE, supra note 13; Nature Genetics Editorial, supra note 13.