Characterization of clinical study populations by race and ethnicity in biomedical literature

Ethnicity and Disease

Volumn 22, Issue 1, 2012, Pages 96-101

  Kanakamedala, Priyanka ^a   Haga, Susanne B ^a  

^a DUKE UNIVERSITY   (United States)

Author keywords

Clinical trials; Ethnicity; Publications; Race

Indexed keywords

AFRICAN AMERICAN; ARTICLE; ASIAN; CAUCASIAN; ETHNICITY; HISPANIC; HUMAN; INFORMATION PROCESSING; MEDICAL LITERATURE; NEGRO; RACE; RESEARCH SUBJECT; SCIENTIST;

BIBLIOMETRICS; BIOMEDICAL RESEARCH; CONTINENTAL POPULATION GROUPS; ETHNIC GROUPS; HUMANS; PERIODICALS AS TOPIC; PREVALENCE; PUBLICATIONS;

EID: 84861682176     PISSN: 1049510X     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (54)

1. National Institutes of Health, National Human Genome Research Institute. International Human Genome Sequencing Consortium describes finished human genome sequence; 2004. http://www.genome.gov/12513430. Accessed September 8, 2011.
2. Caulfield T, Fullerton SM, Ali-Khan SE, et al. Race and ancestry in biomedical research: exploring the challenges. Genome Med. 2009;1(1):8.
3. The use of racial, ethnic, and ancestral categories in human genetics research. Am J Hum Genet. 2005;77(4):519-532.
4. Gabriel SB, Schaffner SF, Nguyen H, et al. The structure of haplotype blocks in the human genome. Science. 2002;296(5576):2225-2229. (Pubitemid 34680308)
5. Rosenberg NA, Pritchard JK, Weber JL, et al. Genetic Structure of Human Populations. Science. 2002. 2002;298(5602):2381-2385.
6. National Institutes of Health. NIH policy on reporting race and ethnicity data: subjects in clinical research (NOT-OD-01-053); 2001. http://grants.nih. gov/grants/guide/notice-files/not-od-01-053.html. Accessed September 8, 2011.
7. Office of Management and Budget. Revisions to the standards for classification of federal data on race and ethnicity. 62 Federal Register, 58781-58790 (1997).
8. US Food and Drug Administration. Guidance for industry: collection of race and ethnicity data in clinical trials; September 2005. http://www.fda.gov/ RegulatoryInformation/Guidances/ucm126340.htm. Accessed September 8, 2011.
9. International Committee of Medical Journal Editors. Uniform requirements for manuscripts submitted to biomedical journals; 2009. http://www.icmje.org/ manuscript-1prepare.html. Accessed September 8, 2011.
10. Smart A, Tutton R, Martin P, Ellison GT, Ashcroft R. The standardization of race and ethnicity in biomedical science editorials and UK biobanks. Soc Stud Sci. 2008;38(3):407-423.
11. Nobles M. Shades of Citizenship. Stanford: Stanford University Press; 2000.
12. Nobles M. Racial Categorization and Censuses. In: Kertzer D, Artel D, eds. Census and Identity. Cambridge: Cambridge University Press; 2002.
13. Bamshad M. Lost in translation: meaningful policies for writing about genetics and race. Am J Med Genet A. 2007;143A(9):971-972. (Pubitemid 46700903)
14. Duster T. Medicine. Race and reification in science. Science. 2005;307(5712):1050-1051.
15. Goldstein DB,Willard HF. A medicine for one race only; 2005. http://news.duke.edu/2005/01/raceonly.html. Accessed September 8, 2011.
16. Burchard EG, Ziv E, Coyle N, et al. The importance of race and ethnic background in biomedical research and clinical practice. N Engl J Med. 2003;348(12):1170-1175. (Pubitemid 36337330)
17. Ma IW, Khan NA, Kang A, Zalunardo N, Palepu A. Systematic review identified suboptimal reporting and use of race/ethnicity in general medical journals. J Clin Epidemiol. Jun 2007;60(6):572-578. (Pubitemid 46691338)
18. Swanson GM, Bailar JC, 3rd. Selection and description of cancer clinical trials participants-science or happenstance? Cancer. 2002;95(5):950-959. (Pubitemid 34925343)
19. Corbie-Smith G, St George DM, Moody-Ayers S, Ransohoff DF. Adequacy of reporting race/ethnicity in clinical trials in areas of health disparities. J ClinEpidemiol. 2003;56(5):416-420. (Pubitemid 36694093)
20. Ackerman PD, Kelly ML, Walsh CA, Ross LF. Do peer guidelines or editorial policies affect the reporting and discussion of race and ethnicity in pediatric research? Account Res. 2005;12(1):17-31.
21. Brahan D, Bauchner H. Changes in reporting of race/ethnicity, socioeconomic status, gender, and age over 10 years. Pediatrics. 2005;115(2):e163-166. (Pubitemid 43193795)
22. Anderson MR, Moscou S. Race and ethnicity in research on infant mortality. Fam Med. 1998;30(3):224-227. (Pubitemid 28136133)
23. Drevdahl DJ, Philips DA, Taylor JY. Uncontested categories: the use of race and ethnicity variables in nursing research. Nurs Inq. 2006;13(1):52-63. (Pubitemid 43438221)
24. Ahdieh L, Hahn RA. Use of the terms 'race', 'ethnicity', and 'national origins': a review of articles in the American Journal of Public Health, 1980-1989. Ethn Health. 1996;1(1):95-98. (Pubitemid 126710608)
25. Comstock RD, Castillo EM, Lindsay SP. Fouryear review of the use of race and ethnicity in epidemiologic and public health research. Am J Epidemiol. 2004;159(6):611-619. (Pubitemid 38327796)
26. Berger JS, Melloni C, Wang TY, et al. Reporting and representation of race/ethnicity in published randomized trials. Am Heart J. 2009;158(5):742-747.
27. Drevdahl D, Taylor JY, Phillips DA. Race and ethnicity as variables in Nursing Research, 1952-2000. Nurs Res. 2001;50(5):305-313. (Pubitemid 33603822)
28. Murthy VH, Krumholz HM, Gross CP. Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA. 2004;291(22):2720-2726. (Pubitemid 38725421)
29. Stewart JH, Bertoni AG, Staten JL, Levine EA, Gross CP. Participation in surgical oncology clinical trials: gender-, race/ethnicity-, and agebased disparities. Ann Surg Oncol. 2007;14(12):3328-3334. (Pubitemid 350160101)
30. Tejeda HA, Green SB, Trimble EL, et al. Representation of African-Americans, Hispanics, and Whites in National Cancer Institute cancer treatment trials. J Natl Cancer Inst. 1996;88(12):812-816. (Pubitemid 26187390)
31. Winker MA. Race and ethnicity in medical research: requirements meet reality. J Law Med Ethics. 2006;34(3):520-525, 480.
32. Corbie-Smith G, Henderson G, Blumenthal C, Dorrance J, Estroff S. Conceptualizing race in research. J Natl Med Assoc. 2008;100(10):1235-1243.
33. Bhopal RS, Phillimore P, Kohli HS. Inappropriate use of the term 'Asian': an obstacle to ethnicity and health research. J Public Health Med. 1991;13(4):244-246.
34. Rankin J, Bhopal R. Current census categories are not a good match for identity. BMJ. 1999;318(7199):1696. (Pubitemid 29276780)
35. Frampton GK, Shepherd J, Dorne JL. Demographic data in asthma clinical trials: a systematic review with implications for generalizing trial findings and tackling health disparities. Soc Sci Med. 2009;69(8):1147-1154.
36. Shanawani H, Dame L, Schwartz DA, Cook-Deegan R. Non-reporting and inconsistent reporting of race and ethnicity in articles that claim associations among genotype, outcome, and race or ethnicity. J Med Ethics. 2006;32(12):724-728. (Pubitemid 46001989)
37. Sankar P, Cho MK, Mountain J. Race and ethnicity in genetic research. Am J Med Genet A. 2007;143A(9):961-970. (Pubitemid 46700902)
38. Hahn RA. The state of federal health statistics on racial and ethnic groups. JAMA. 1992;267(2):268-271.
39. Kaplan JB, Bennett T. Use of race and ethnicity in biomedical publication. JAMA. 2003;289(20):2709-2716. (Pubitemid 37430142)
40. Trevino FM. Standardized terminology for hispanic populations. Am J Public Health. 1987;77(1):69-72.
41. Haga SB, Venter JC. Genetics. FDA races in wrong direction. Science. 2003;301(5632):466. (Pubitemid 36900291)
42. The unexamined 'Caucasian'. Nat Genet. 2004;36(6):541.
43. Osborne NG, Feit MD. The use of race in medical research. JAMA. 1992;267(2):275-279.
44. Bhopal R, Donaldson L. White, European, Western, Caucasian, or what? Inappropriate labeling in research on race, ethnicity, and health. Am J Public Health. 1998;88(9):1303-1307.
45. Bhopal R, Kohli H, Rankin J. Editors' practice and views on terminology in ethnicity and health research. Ethn Health. 1997;2(3):223-227. (Pubitemid 27507408)
46. Sankar P, Cho MK. Genetics. Toward a new vocabulary of human genetic variation. Science. 2002;298(5597):1337-1338. (Pubitemid 35346117)
47. Williams DR. The concept of race in Health Services Research: 1966 to 1990. Health Serv Res. 1994;29(3):261-274.
48. Schwartz AG, Wenzlaff AS, Bock CH, et al. Admixture Mapping of Lung Cancer in 1,812 African Americans. Carcinogenesis.2010.
49. Shields AE, Blumenthal D, Weiss KB, Comstock CB, Currivan D, Lerman C. Barriers to translating emerging genetic research on smoking into clinical practice. Perspectives of primary care physicians. J Gen Intern Med. 2005;20(2):131-138. (Pubitemid 40626990)
50. Kumar R, Seibold MA, Aldrich MC, et al. Genetic ancestry in lung-function predictions. N Engl J Med. 2010;363(4):321-330.
51. Halder I, Yang BZ, Kranzler HR, Stein MB, Shriver MD, Gelernter J. Measurement of admixture proportions and description of admixture structure in different U.S. populations. Hum Mutat. 2009;30(9):1299-1309.
52. Klimentidis YC, Miller GF, Shriver MD. Genetic admixture, self-reported ethnicity, self-estimated admixture, and skin pigmentation among Hispanics and Native Americans. Am J Phys Anthropol. 2009;138(4):375-383.
53. Scanlon PD, Shriver MD. "Race correction"in pulmonary-function testing. N Engl J Med. 2010;363(4):385-386.
54. Bamshad M, Wooding S, Salisbury BA, Stephens JC. Deconstructing the relationship between genetics and race. Nat Rev Genet. 2004;5(8):598-609. (Pubitemid 39005754)