Journal of General Internal Medicine

, Volume 24, Issue 3, pp 299–304 | Cite as

Asking the Right Questions: Views on Genetic Variation Research Among Black and White Research Participants

  • Jada Bussey-Jones
  • Gail Henderson
  • Joanne Garrett
  • Mairead Moloney
  • Connie Blumenthal
  • Giselle Corbie-Smith
Original Article



Genetic variation research (GVR) may raise concerns about misuse of information and discrimination. Seemingly contradictory positive views about GVR have also been reported.


To dissect this inconsistency, our objectives were to: (1) explore open-ended views of GVR and (2) quantify views of and willingness to participate in GVR by race.


Cross-sectional study.


801 African-American and white prior participants in a case-control genetic epidemiology study of colon cancer risks (NCCCS).


Qualitative measures evaluated responses to questions about good and bad things about GVR. Quantitative measures evaluated positive and negative perceptions, perceptions of discrimination, and likelihood of future participation by race.


Open-ended queries about GVR resulted in few “negative” responses. In closed-ended questions, however, African Americans were more likely to feel that such research would: result in higher insurance (41% vs. 30%, p = 0.008), not benefit minorities (29% vs. 14%, p=<0.001), reinforce racism (32% vs. 20%, p = 0.002), and use minorities as guinea pigs (27% vs. 6%, p < 0.001). Overall, after adjustment for potential confounding factors, African-American race remained inversely associated with feeling “very positive” about GVR (46% vs. 57%, p = 0.035). In contrast, African Americans were as likely as whites to express willingness to participate in future GVR studies (46%).


Open-ended questions about GVR were unlikely to spontaneously generate “negative” responses. In contrast, when presented specific examples of potentially negative implications, more respondents agreed, and minorities were more likely to express concerns. This suggests that while participants appear generally positive about GVR, their inability to articulate views regarding these complex concepts may require that researchers engage lay audiences, ensure accurate understanding, and provide them with language to express concerns.


genetic variation research discrimination response evaluation 



This work was supported by the NIH-NHGRI grant 1-R01-HG002830. This project was also supported by grant no. P50HG004488 from the National Human Genome Research Institute.

Conflict of Interest

None disclosed.


  1. 1.
    Tate S, Goldstein D. Will tomorrow’s medicines work for everyone? Nature Genetics Supplement. 2004;36(11):534–42. NovemberCrossRefGoogle Scholar
  2. 2.
    Bloche G. Race-Based Therapeutics. N Engl J Med. 2004;351(20):2035–7. November 11PubMedCrossRefGoogle Scholar
  3. 3.
    Bamshad M, Wooding S, Salisbury B, Stephens C. Deconstructuring the relationship between genetics and race. Nat Rev, Genet. 2004;5:596–609. August.CrossRefGoogle Scholar
  4. 4.
    Condit C, Parrott R, Bates B, Bevan J, Achter P. Exploration of the impact of messages about genes and race on lay attitudes. Clin Genet. 2004;66:402–8.PubMedCrossRefGoogle Scholar
  5. 5.
    Foster M, Sharp R. Beyond race: towards a whole-genome perspetive on human populations and genetic variation. Nat Rev, Genet. 2004;5:790–6. OctoberCrossRefGoogle Scholar
  6. 6.
    Goodman A. Why Genes Don’t Count (for Racial Differences in Health). Am J Public Health. November 2000;90(11):1699–702.PubMedCrossRefGoogle Scholar
  7. 7.
    Shields A, Fortun M, Hammonds E, et al. The Use of Race Variables in Genetic Studies of Complex Traits and the Goal of Reducing Health Disparities. Am Psychol. 2005;60(1):77–103. JanuaryPubMedCrossRefGoogle Scholar
  8. 8.
    Sankar P, Cho MK, Condit CM, et al. Genetic research and health disparities. JAMA. 2004;291(24):2985–9. Jun 23PubMedCrossRefGoogle Scholar
  9. 9.
    Sterling R, Henderson GE, Corbie-Smith G. Public willingness to participate in and public opinions about genetic variation research: a review of the literature. Am J Public Health. 2006;96(11):1971–8. NovPubMedCrossRefGoogle Scholar
  10. 10.
    Bates BR, Lynch JA, Bevan JL, Condit CM. Warranted concerns, warranted outlooks: a focus group study of public understandings of genetic research. Soc Sci Med. 2005;60(2):331–44. JanPubMedCrossRefGoogle Scholar
  11. 11.
    Dickson D. Public views genetic research cautiously. Nat Med. 2001;7(4):391. AprPubMedCrossRefGoogle Scholar
  12. 12.
    Furr LA. Perceptions of genetics research as harmful to society: differences among samples of African-Americans and European-Americans.[see comment]. Genetic Testing. 2002;6(1):25–30.PubMedCrossRefGoogle Scholar
  13. 13.
    Haddow G, Laurie G, Cunningham-Burley S, Hunter KG. Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal. Soc Sci Med. 2007;64(2):272–82. JanPubMedCrossRefGoogle Scholar
  14. 14.
    Lassen J, Jamison A. Genetic technologies meet the public: the discourses of concern. Science Technology & Human Values. 2006;31(1):8–28. JanCrossRefGoogle Scholar
  15. 15.
    Schulz A, Caldwell C, Foster S. What are they going to do with the information? Latino/Latina and African American Perspectives on the Human Genome Project. Health Educ Behav. 2003;30(2):151–69. AprilPubMedCrossRefGoogle Scholar
  16. 16.
    Siang S. Americans Concernced About Ethics, Morality of Scientific Research, Survey Shows. Journal of the National Cancer Institute. 2001;93(24):1841. December 19PubMedCrossRefGoogle Scholar
  17. 17.
    Henderson BJ, Maguire BT. Three lay models of disease inheritance. Soc Sci Med. 2000;50:293–301.PubMedCrossRefGoogle Scholar
  18. 18.
    Achter P, Parrott R, Silk K. African Americans’ opinions about human-genetics research. Polit Life Sci. 2004;23(1):60–6. MarCrossRefGoogle Scholar
  19. 19.
    Corbie-Smith G. The continuing legacy of the Tuskegee Syphilis Study: considerations for clinical investigation.[see comment]. Am J Medical Sciences. 1999;317(1):5–8. JanCrossRefGoogle Scholar
  20. 20.
    Bevan J, Lynch J, Dubriwny T, et al. Informed lay preferences for delivery of racially varied pharmacogenomics. Genet Med. 2003;5(5):393–9. Sept/OctPubMedCrossRefGoogle Scholar
  21. 21.
    Condit C. How the public understands genetics Non-deterministic and non-discrimanatory interpretations of the "blueprint" metaphor. Pub Understand Sci. 1999;8:169–80.CrossRefGoogle Scholar
  22. 22.
    Foster M, Sharp R, Freeman W, Chino M, Bernsten D, Carter T. The Role of Community Review in Evaluating the Risks of Human Genetic Variation Research. Am J Hum Genet. 1999;64:1719–27. May 4PubMedCrossRefGoogle Scholar

Copyright information

© Society of General Internal Medicine 2008

Authors and Affiliations

  • Jada Bussey-Jones
    • 1
  • Gail Henderson
    • 2
  • Joanne Garrett
    • 2
  • Mairead Moloney
    • 2
  • Connie Blumenthal
    • 2
  • Giselle Corbie-Smith
    • 2
  1. 1.Emory University School of MedicineAtlantaUSA
  2. 2.University of North CarolinaChapel HillUSA

Personalised recommendations