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

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

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 ( )?

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

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

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

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

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

Interest in participation in clinical trials Level of Interest

Perceived Barriers

Lack of Interest

Confidentiality Issues

Mistrust

Impact of the Unethical Aspects of the Tuskegee Syphilis Study

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

Gender Differences P-value <.001 Level of Impact

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

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

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

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

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