African Americans and HIV Clinical Research



African-Americans are significantly overrepresented among individuals with HIV/AIDS in the USA. This fact has been well documented and publicized.1 It is much less well known that African-Americans are underrepresented in research on HIV/AIDS in the USA. A recent search of publications listed on Medline revealed over 94,000 articles published between 1996 and July 2008 in the area of HIV-1 and AIDS. Of these, only 1.7% refers to African-Americans and/or Blacks.2 This is a slight increase over that of a similar review published in 2000, which revealed that less that 1% of the AIDS-related literature in Medline through 1999 related explicitly to African-Americans.3 This is despite the fact that of the 1,014,797 cases of AIDS reported to the CDC through 2001, African-Americans accounted for 40.4% of the total, and nearly 60% of women, heterosexuals, and children suffering with this disease.1 Furthermore, of the 36,817 newly diagnosed cases of HIV reported to the CDC in 2006, African-Americans accounted for 49%.1

One of the primary reasons for the underrepresentation of African-Americans in medical literature on HIV/AIDS is that African-Americans are less likely to participate in clinical trials. A study published in the New England Journal of Medicine revealed that 14% of adults receiving HIV care participated in clinical trials and 24% received experimental medications. Blacks were 50% less likely to be clinical trial participants or receive experimental medications compared with whites. Among those who sought experimental medications, Caucasians received them more often than Blacks (77 vs. 69%; p = 0.03).4 According to the Adult AIDS Clinical Trials Group (AACTG) Annual Report 2002, African-Americans comprised 47.6% of national AIDS cases in July 2000–2001, while 27.7% accrued in AACTG clinical trial sites.5 More recently, the Supplement to HIV and AIDS Surveillance (SHAS) Project reported that 17% of the 6,892 HIV-infected subjects in the study had been in a clinical trial; however, in the adjusted model, African-Americans were 20% less likely to report clinical trial participation (OR 0.80, 95% CI 0.6–0.9) than White non-Hispanics.6 This lack of participation in clinical trials likely results from many factors including a lack of trust in the medical establishment on the part of African-American patients, lack of access to research institutions where clinical research takes place, and stereotypes regarding African-American’s willingness and appropriateness for participation in clinical trials. The effect of this underrepresentation is that African-Americans have less access to state-of-the art drugs and treatment strategies. And importantly, data from research in which African-Americans are not adequately represented may not be directly applicable to African-Americans, may underrecognize differences between African-Americans and other groups, and may not address issues that disproportionately impact African-Americans. This chapter will (1) review the recent literature on participation of African-Americans in HIV clinical trials and compare it to other research areas, (2) discuss the barriers to clinical trial participation, and (3) discuss strategies to improve clinical trial participation among African-American and other underrepresented groups.


Clinical Trial Participation Historical Injustice Clinical Trial Participant Clinical Trial Site Tertiary Syphilis 


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Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  1. 1.Section of Infectious DiseasesRush University Medical CenterChicago IUSA

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