1. Remnants of the Tuskegee Syphilis Study Effects on University Freshmen: Yet a Possible Barrier to Research Participation? Crystal B. Spivey, MPH, DrPH March 9, 2004 Supported by: R24MD00151 NCMHD

2. Co- Authors  Tina Simpson, MD 1  Tina Vazin, PhD 2  M. Kim Oh, MD 1  Karyn Gunn, PhD 2 1 University of Alabama at Birmingham, AL 2 AL State University, Montgomery, AL

3. Introduction  African Americans lag behind the overall population on virtually all health status indicators  African Americans’ decision to participate in research is a difficult one  Tuskegee Syphilis Study (1932-1972)?

4. Purpose of the Study  Identify clinical research interest of young college students  Identify perceived barriers to research participation

5. Methods: Setting  Historically Black College University in the Southeastern U.S.

6. Methods  Cross-sectional survey  Conducted Fall 2003 (Sept-Oct)  Chi-square method of analysis

7. Survey Instrument  Participant Demographics (race, gender, and age)  Level of interest in STD/HIV and pregnancy prevention clinical trials  Perception of barriers

8. Study Population Characteristics  N = 691  95% African Americans (less than 1% White, 3% more than one race, and 1% did not categorize )  57% Females  16-24 years of age  Mean age 18

9. Interest in participation in clinical trials Level of Interest

10. Perceived Barriers

11. Lack of Interest

12. Confidentiality Issues

13. Mistrust

14. Impact of the Unethical Aspects of the Tuskegee Syphilis Study

15. Impact of the Tuskegee Syphilis Study P-value =.020 Level of Impact

16. Gender Differences P-value <.001 Level of Impact

17. Association between Tuskegee Syphilis Study and other study barriers  Lack of Interestp-value <.001  Confidentiality p-value<.001  Mistrust p-value<.001

18. Conclusions  Tuskegee Syphilis Study continues to influence African Americans willingness to participate in clinical research  Confidentiality Issues very important  Must build a foundation to develop trust

20. Confidentiality Issues P-value <.001 I Impact of the Tuskegee Study Importance of Confidentiality Level of Impact

21. Mistrust- Cannot trust the researchers P-value <.001 Impact of the Tuskegee Study Mistrust of researchers Level of Impact

22. Just not interested in being in a research study P-value <.001 Lack of interest Impact of the Tuskegee Study Level of Impact