Knowledge of DES and Thalidomide: Relationship to Attitudes to Participation of Women in Biomedical Research

Purpose The purpose of this study was to examine the relationship between attitudes towards risks perceived for women when participating as subjects in biomedical research and knowledge of diethylstilbestrol and thalidomide, and to examine whether relationships vary across race/ethnic groups and by sex. Methods The Tuskegee Legacy Project Questionnaire was administered via a RDD telephone interview to 353 adult Blacks, 157 Hispanics and 623 Whites in Birmingham, AL; Tuskegee, AL; Hartford, CT; and San Antonio, TX. This questionnaire included questions which asked study participants whether or not they felt a) that women, compared to men, were more likely to be taken advantage of when participants in biomedical research studies, b) whether women of childbearing age should participate in biomedical research studies. Participants were also asked whether they knew about the “diethylstilbestrol study” and/or the “thalidomide study.” Results Overall, knowledge of DES, but not of thalidomide, was increased in those who felt that women were more likely, compared to men, to be “taken advantage of” when controlling for potential confounders (ORadjusted = 1.58, 95%CI 1.02, 1.93). Knowledge of DES was also independently related to whether one felt that women of childbearing age should participate in biomedical research as participants, with those who stated that women of childbearing age should NOT participate in biomedical research as participants less likely to report knowledge of DES (ORadjusted = 0.59, 95%CI 0.41, 0.86). Conclusion Knowledge of DES was more common in those who stated that women were more likely to be “taken advantage of” and was also related to beliefs of whether women of childbearing age should participate in biomedical research studies, with those who stated that women are more likely than men to be taken advantage of were more likely to report knowledge of DES