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J Natl Med Assoc. 2004 August; 96(8): 1051–1064.
PMCID: PMC2568492

The Tuskegee Study of Untreated Syphilis and public perceptions of biomedical research: a focus group study.

Abstract

African Americans are less likely than European Americans to participate in biomedical research. Researchers often attribute nonparticipation to the "Tuskegee effect." Using critical qualitative analysis of focus group data, we examined the public's use of the Tuskegee Study of Untreated Syphilis (TSUS) to discuss biomedical research. Our participants articulated three primary themes in relation to TSUS: 1) that TSUS made them suspicious about biomedical research; 2) that other values had to weigh against concerns about TSUS; and 3) that African Americans could take steps to resolve their concerns about TSUS. African Americans were more likely to discuss TSUS than were European Americans. African Americans did not use TSUS to express simple fear. African Americans suggested issues other than TSUS that influence the decision to participate in research. African Americans indicated specific reforms that would increase participation in research. We discuss how a better understanding of African Americans' use of TSUS can enhance research participation and allay concerns about "another Tuskegee."

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Selected References

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  • Angell M. Investigators' responsibilities for human subjects in developing countries. N Engl J Med. 2000 Mar 30;342(13):967–969. [PubMed]
  • Quinn TC, Wawer MJ, Sewankambo N, Serwadda D, Li C, Wabwire-Mangen F, Meehan MO, Lutalo T, Gray RH. Viral load and heterosexual transmission of human immunodeficiency virus type 1. Rakai Project Study Group. N Engl J Med. 2000 Mar 30;342(13):921–929. [PubMed]
  • White RM. Unraveling the Tuskegee Study of Untreated Syphilis. Arch Intern Med. 2000 Mar 13;160(5):585–598. [PubMed]
  • SCHUMAN SH, OLANSKY S, RIVERS E, SMITH CA, RAMBO DS. Untreated syphilis in the male negro; background and current status of patients in the Tuskegee study. J Chronic Dis. 1955 Nov;2(5):543–558. [PubMed]
  • PETERS JJ, PEERS JH, OLANSKY S, CUTLER JC, GLEESON GA. Untreated syphilis in the male Negro; pathologic findings in syphilitic and nonsyphilitic patients. J Chronic Dis. 1955 Feb;1(2):127–148. [PubMed]
  • OLANSKY S, SCHUMAN SH, PETERS JJ, SMITH CA, RAMBO DS. Untreated syphilis in the male Negro. X. Twenty years of clinical observation of untreated syphilitic and presumably nonsyphilitic groups. J Chronic Dis. 1956 Aug;4(2):177–185. [PubMed]
  • ROCKWELL DH, YOBS AR, MOORE MB., Jr THE TUSKEGEE STUDY OF UNTREATED SYPHILIS; THE 30TH YEAR OF OBSERVATION. Arch Intern Med. 1964 Dec;114:792–798. [PubMed]
  • Caldwell JG, Price EV, Schroeter AL, Fletcher GF. Aortic regurgitation in the Tuskegee study of untreated syphilis. J Chronic Dis. 1973 Mar;26(3):187–194. [PubMed]
  • Thomas SB, Quinn SC. The Tuskegee Syphilis Study, 1932 to 1972: implications for HIV education and AIDS risk education programs in the black community. Am J Public Health. 1991 Nov;81(11):1498–1505. [PubMed]
  • Gamble VN. Under the shadow of Tuskegee: African Americans and health care. Am J Public Health. 1997 Nov;87(11):1773–1778. [PubMed]
  • Coughlin SS, Etheredge GD, Metayer C, Martin SA., Jr Remember Tuskegee: public health student knowledge of the ethical significance of the Tuskegee Syphilis Study. Am J Prev Med. 1996 Jul-Aug;12(4):242–246. [PubMed]
  • Shavers VL, Lynch CF, Burmeister LF. Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. J Natl Med Assoc. 2000 Dec;92(12):563–572. [PMC free article] [PubMed]
  • Freimuth VS, Quinn SC, Thomas SB, Cole G, Zook E, Duncan T. African Americans' views on research and the Tuskegee Syphilis Study. Soc Sci Med. 2001 Mar;52(5):797–808. [PubMed]
  • Condit Celeste, Templeton Alan, Bates Benjamin R, Bevan Jennifer L, Harris Tina M. Attitudinal barriers to delivery of race-targeted pharmacogenomics among informed lay persons. Genet Med. 2003 Sep-Oct;5(5):385–392. [PubMed]
  • Parrott Roxanne L, Silk Kami J, Condit Celeste. Diversity in lay perceptions of the sources of human traits: genes, environments, and personal behaviors. Soc Sci Med. 2003 Mar;56(5):1099–1109. [PubMed]
  • Corbie-Smith G. The continuing legacy of the Tuskegee Syphilis Study: considerations for clinical investigation. Am J Med Sci. 1999 Jan;317(1):5–8. [PubMed]
  • Caplan AL, Annas GJ. Tuskegee as metaphor. Science. 1999 Jul 2;285(5424):48–50. [PubMed]
  • Francis CK. Medical ethos and social responsibility in clinical medicine. J Urban Health. 2001 Mar;78(1):29–45. [PubMed]
  • Kirp David L. Blood, sweat, and tears: the Tuskegee experiment and the era of AIDS. Tikkun. 1995 May-Jun;10(3):50–54. [PubMed]
  • Fairchild AL, Bayer R. Uses and abuses of Tuskegee. Science. 1999 May 7;284(5416):919–921. [PubMed]
  • Gamble VN. The Tuskegee Syphilis Study and women's health. J Am Med Womens Assoc. 1997 Fall;52(4):195–196. [PubMed]
  • Roy B. The Tuskegee Syphilis Experiment: biotechnology and the administrative state. J Natl Med Assoc. 1995 Jan;87(1):56–67. [PMC free article] [PubMed]
  • Jones JH. The Tuskegee legacy. AIDS and the black community. Hastings Cent Rep. 1992 Nov-Dec;22(6):38–40. [PubMed]
  • Schmidt Terri A. The legacy of the Tuskegee syphilis experiments for emergency exception from informed consent. Ann Emerg Med. 2003 Jan;41(1):79–81. [PubMed]
  • Reverby SM. Tuskegee: could it happen again? Postgrad Med J. 2001 Sep;77(911):553–554. [PMC free article] [PubMed]
  • Cox JD. Paternalism, informed consent and Tuskegee. Int J Radiat Oncol Biol Phys. 1998 Jan 1;40(1):1–2. [PubMed]
  • el-Sadr W, Capps L. The challenge of minority recruitment in clinical trials for AIDS. JAMA. 1992 Feb 19;267(7):954–957. [PubMed]
  • Swanson GM, Ward AJ. Recruiting minorities into clinical trials: toward a participant-friendly system. J Natl Cancer Inst. 1995 Dec 6;87(23):1747–1759. [PubMed]
  • Grunfeld GB. Dissimilarities between Tuskegee Study and HIV/AIDS programs emphasized. Am J Public Health. 1992 Aug;82(8):1176–1176. [PubMed]
  • White Robert M. Sociocultural issues in clinical research: unraveling the Tuskegee syphilis study. Arthritis Rheum. 2002 Aug;47(4):457–458. [PubMed]
  • Farré Magí, Bosch Fèlix, Roset Pere N, Baños Josep-E. Putting clinical pharmacology in context: the use of popular movies. J Clin Pharmacol. 2004 Jan;44(1):30–36. [PubMed]
  • Lu Po H, Boone Kyle Brauer, Cozolino Louis, Mitchell Cary. Effectiveness of the Rey-Osterrieth Complex Figure Test and the Meyers and Meyers recognition trial in the detection of suspect effort. Clin Neuropsychol. 2003 Aug;17(3):426–440. [PubMed]
  • Bevan Jennifer L, Lynch Jonh A, Dubriwny Tasha N, Harris Tina M, Achter Paul J, Reeder Amy L, Condit Celeste M. Informed lay preferences for delivery of racially varied pharmacogenomics. Genet Med. 2003 Sep-Oct;5(5):393–399. [PubMed]
  • Cooper-Patrick L, Gallo JJ, Gonzales JJ, Vu HT, Powe NR, Nelson C, Ford DE. Race, gender, and partnership in the patient-physician relationship. JAMA. 1999 Aug 11;282(6):583–589. [PubMed]
  • Chen J, Rathore SS, Radford MJ, Wang Y, Krumholz HM. Racial differences in the use of cardiac catheterization after acute myocardial infarction. N Engl J Med. 2001 May 10;344(19):1443–1449. [PubMed]
  • Noah Barbara A. The participation of underrepresented minorities in clinical research. Am J Law Med. 2003;29(2-3):221–245. [PubMed]
  • King Talmadge E., Jr Racial disparities in clinical trials. N Engl J Med. 2002 May 2;346(18):1400–1402. [PubMed]

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