title: Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies.
abstract: The under-representation of racial/ethnic minorities among medical research participants has recently resulted in mandates for their inclusion by the National Institutes of Health (NIH). Therefore, there is a need to determine how history, attitudes, cultural beliefs, social issues, and investigator behavior affect minority enrollment in medical research studies. From January 1998 to March 1999, 179 African-American and white residents of the Detroit Primary Metropolitan Statistical Area (PMSA) participated in a mail and telephone survey designed to examine impediments to African-American participation in medical research studies. Chi-square tests were performed to assess differences between the study groups using the Survey Data Analysis Program (SUDAAN). Eighty-one percent of African Americans and 28% of whites had knowledge of the Tuskegee Study (p = <0.001). Knowledge of the Tuskegee Study resulted in less trust of researchers for 51% of African-Americans and 17% of whites (p = 0.02). Forty-six percent of African-Americans and 34% of whites indicated that their knowledge of the study would affect future research participation decisions (p = 0.25). Of these, 49% of African-Americans and 17% of whites would not be willing to participate in future medical research studies (p = 0.05). This study confirms the need for medical researchers to confront the issue of the Tuskegee Study and its continuing impact on African-Americans' trust of medical research studies.
authors.affiliation: Department of Epidemiology, School of Hygiene and Public Health, Johns Hopkins University, Baltimore, MD 21205, USA.
authors.forename: V L
authors.initials: VL
authors.lastname: Shavers
authors.forename: C F
authors.initials: CF
authors.lastname: Lynch
authors.forename: L F
authors.initials: LF
authors.lastname: Burmeister
mesh_terms: D000293:Adolescent; D000328:Adult; D001741:Black or African American / Q000523:psychology; D001294:Attitude to Health / Q000208:ethnology*; D002986:Clinical Trials as Topic / Q000523:psychology*; D003466:Cultural Characteristics; D004992:Ethics, Medical; D005260:Female; D017144:Focus Groups; D006801:Humans; D007258:Informed Consent; D008297:Male; D008824:Michigan; D008875:Middle Aged; D010817:Physician-Patient Relations; D012106:Research; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D044465:White People / Q000523:psychology