Genes, race and research ethics: Who's minding the store?

Journal of Medical Ethics

Volumn 34, Issue 6, 2008, Pages 495-500

  Hunt, L M ^a,b   Megyesi, M S ^b  

^a MICHIGAN STATE UNIVERSITY   (United States)

^b MICHIGAN STATE UNIVERSITY   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CLASSIFICATION; ETHICS; ETHNOLOGY; FEMALE; GENETICS; HUMAN; INTERVIEW; MALE; MIDDLE AGED; RACE; RESEARCH ETHICS; UNITED STATES;

ADULT; AGED; CONTINENTAL POPULATION GROUPS; ETHICS, RESEARCH; FEMALE; GENETIC RESEARCH; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; UNITED STATES;

EID: 55249112787     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/jme.2007.021295     Document Type: Article

References (62)

1. International HapMap Consortium. Integrating ethics and science in the International HapMap Project. Nat Rev Genet 2004;5:467-75.
2. International HapMap Project. See http://www.hapmap.org/thehapmap. html.en (accessed 12 Mar 2008).
3. Altshuler D, Brooks LD, Chakravarti A, et al. A haplotype map of the human genome. Nature 2005;437:1299-320.
4. Lillquist E, Sullivan CA. Legal regulation of the use of race in medical research. J Law Med Ethics 2006;34:535-51.
5. Roberts DE. Legal constraints on the use of race in biomedical research: toward a social justice framework. J Law Med Ethics 2006;34:526-34.
6. Epstein S. Bodily differences and collective identities: the politics of gender and race in biomedical research in the United States. Body & Society 2004;10:183-203.
7. OMB (Office of Management and Budget). Revisions to the standards for the classification of federal data on race and ethnicity. US Census Bureau, Population Division 2 Nov 2000, http://www.census.gov/population/www/socdemo/ race/Ombdir15.html (accessed 12 Mar 2008).
8. Mays VM, Ponce NA, Washington DL, et al. Classification of race and ethnicity: implications for public health. Annu Rev Public Health 2003;24:83-110.
9. Kertzer D, Arel D. Census, identity formation, and the struggle for political power. In: Kertzer D, Arel D, eds. Census and identity: the politics of race, ethnicity and identity in national censuses. Cambridge: Cambridge University Press, 2002.
10. Shields AE, Fortun M, Hammonds EM, et al. The use of race variables in genetic studies of complex traits and the goal of reducing health disparities: a transdisciplinary perspective. Am Psychol 2005 Jan;60:77-103.
11. Shim JK. Constructing race across the science-lay divide: racial formation in the epidemiology and experience of cardiovascular disease. Soc Stud Sci 2005;35:405-36.
12. Hunt LM. Health research: what's culture got to do with it? Lancet 2005;366:617-8.
13. Braun L. Race, ethnicity, and health. Perspect Biol Med 2002;45:159-74.
14. Fine MJ. The role of race and genetics in health disparities research. Am J Public Health 2005;95:2125-8.
15. Outram SM, Ellison GTH. Anthropological insights into the use of race/ethnicity to explore genetic contributions to disparities in health. J Biosoc Sci 2006;38:83-102.
16. Anonymous. Census, race and science. Nat Genet 2000;24:97-8.
17. Brown RA, Armelagos GJ. Apportionment of racial diversity: A Review. Evol Anthropol 2001;10:34-40.
18. Cooper RS, Kaufman JS, Ward R. Race and genomics. N Engl J Med 2003;348:1166-70.
19. Goodman AH. Why genes don't count (for racial differences in health). Am J Public Health 2000;90:1699-702.
20. Keita SOY, Kittles RA. The persistence of racial thinking and the myth of racial divergence. Am Anthropol 1997;99:534-44.
21. Ossorio P, Duster T. Race and genetics: controversies in biomedical, behavioral, and forensic sciences. Am Psychol 2005;60:115-28.
22. Rotimi CN. Are medical and nonmedical uses of large-scale genomic markers conflating genetics and 'race'? Nat Genet 2004;36(11 Suppl):S43-S47.
23. Smedley A, Smedley BD. Race as biology is fiction, racism as a social problem is real. Am Psychol 2005;60:16-26.
24. Bamshad M, Wooding S, Salisbury BA, et al. Deconstructing the relationship between genetics and race. Nat Rev Genet 2004;5:598-609.
25. Bonham VL, Warshauer-Baker E, Collins FS. Race and ethnicity in the genome era. Am Psychol 2005;60:9-15.
26. Collins FS. What we do and don't know about 'race', 'ethnicity', genetics and health at the dawn of the genome era. Nat Genet 2004;36(11 Suppl):S13-S15.
27. Braun L. Genetics and health disparities: what is at stake? In: Singer E, Antonucci T, eds. Proceedings of the workshop on genetics and health disparities. Survey Research Center, Institute for Social, University of Michigan, 2004:123-8.
28. Ellison GTH, Jones IR. Social identities and the 'new genetics': scientific and social consequences. Crit Public Health 2002;12:265-82.
29. Kahn J. How a drug becomes "ethnic": law, commerce, and the production of racial categories in medicine. Yale J Health Policy Law Ethics 2004;4:1-46.
30. Lee SS-J. Racializing drug design: implications of pharmacogenomics for health disparities. Am J Public Health 2005;95:2133-8.
31. Lee SS-J, Mountain J, Koenig BA. The meaning of "race" in the new genomics: implications for health disparities research. Yale J Health Policy Law Ethics 2001;1:33-75.
32. Frank R. What to make of it? The (re)emergence of a biological conceptualization of race in health disparities research. Soc Sci Med 2007;64:1977-83.
33. Krieger N. Stormy weather: race, gene expression, and the science of health disparities. Am J Public Health 2005;95:2155-60.
34. Sankar P, Cho MK, Condit CM, et al. Genetic research and health disparities. JAMA 2004;291:2985-9.
35. Winker MA. Measuring race and ethnicity: Why and how? JAMA 2004;292:1612-14.
36. Cavalli-Sforza LL, Wilson AC, Cantor CR, et al. Call for a worldwide survey of human genetic diversity: a vanishing opportunity for the Human Genome Project. Genomics 1991;11:490-1.
37. Lock M. The HGDP and the politics of bioethics. Politics Life Sci1999;18:323-5.
38. Reardon J. Race to the finish. Princeton, NJ: Princeton University Press, 2004.
39. Resnik DB. The Human Genome Diversity Project: ethical problems and solutions. Politics Life Sci 1999;18:15-23.
40. National Human Genome Research Institute. The ethical, legal and social implications (ELSI) research program. See: http://www.genome.gov/10001618 (accessed 12 Mar 2008).
41. Clayton EW. Ethical, legal, and social implications of genomic medicine. N Engl J Med 2003 Aug 7;349:562-9.
42. Collins FS, Green ED, Guttmacher AE, et al. A vision for the future of genomics research. Nature 2003;422:835-47.
43. Fuller BP, Kahn MJE, Barr PA, et al. Privacy in genetics research. Science 1999;285:1359-61.
44. Thomas JC, Irwin DE, Zuiker ES, et al. Genomics and the public code of ethics. Am J Public Health 2005;95:2139-43.
45. Juengst ET. FACE facts: why human genetics will always provoke bioethics. J Law Med Ethics 2004;32:267-75.
46. Bhopal R. White, European, Western, Caucasian, or what? inappropriate labeling in research on race, ethnicity, and health. Am J Public Health 1998;88:1303-7.
47. Keita SOY, Kittles RA, Royal CD, et al. Conceptualizing human variation. Nat Genet 2004;36(11 Suppl):S17-20.
48. Race Ethnicity and Genetics Working Group. The use of racial, ethnic, and ancestral categories in human genetics research. Am J Hum Genet 2005;77:519-32.
49. Winker MA. Race and ethnicity in medical research: requirements meet reality. J Law Med Ethics 2006;34:520-5.
50. Sankar P, Cho MK, Mountain J. Race and ethnicity in genetic research. Am J Med Genet 2007;Part A(143A):961-70.
51. Statistical Package for the Social Sciences, SPSS for Windows V.10.0. SPSS, Inc., 1999.
52. Scientific Software Development V.4.2 for Windows. Scolari: Sage Publications Software, 2000.
53. Bernard HR. Research methods in anthropology. Thousand Oaks, CA: Sage Publishers, 1994.
54. Miles M, Huberman AM. Qualitative data analysis:an expanded source book. 2 ed. Sage Publications, 1994.
55. Hunt L, Megyesi M. The ambiguous meanings of the racial/ethnic categories routinely used in human genetics research. Soc Sci Med 2007;66:349-61.
56. McCann-Mortimer P, Augoustinos M, LeCouteur A. 'Race' and the Human Genome Project: constructions of scientific legitimacy. Discourse & Society 2004;15:409-32.
57. Shanawani H, Dame L, Schwartz DA, et al. 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;32:724-8.
58. Institute of Science and Technology NU. Race/ethnicity and genetics in science and health. 2007 [cited 2007 Jun 15]; http://ukcorr.org/iss/research/ Completed-Research-Projects/staff_Projects/martin_race.php (accessed 1 Apr 2008).
59. Kahn J. Genes, race, and population: avoiding a collision of categories. Am J Public Health 2006;96:1965-70.
60. Brewer RM. Thinking critically about race and genetics. J Law Med Ethics 2006;34:513-9.
61. Duster T. Lessons from history: why race and ethnicity have played a major role in biomedical research. J Law Med Ethics 2006;34:487-96.
62. Smart A, Tutton R, Ashcroft R, et al. Can science alone improve the measurement and communication of race and ethnicity in genetic research? Exploring the strategies proposed by nature genetics. BioSocieties 2006;1:313-24.