Abstract B19: Reasons for refusal to participate in an epidemiologic study of minority women

Abstract

Abstract Purpose: It is widely believed that minorities are less willing than non-Hispanic whites to participate in biomedical research studies. However, to our knowledge, there are no data comparing refusal rates between African-Americans and Mexican-Americans. We assessed refusal rates and reasons for non-participation in an epidemiologic study of breast cancer in African-American and Mexican-American women. Methods: The multi-center ELLA Bi-National Breast Cancer Study compares patterns of breast cancer tumor markers between women of Mexican descent in both the United States and Mexico. At the University of Texas MD Anderson Cancer Center (MDACC), both Mexican-American and African-American women are screened and recruited by trained study personnel, and an in-person interview is conducted. For women refusing to participate, demographic and clinical characteristics and reasons for refusal are collected at the time of refusal. Logistic regression was used to estimate odds ratios and 95% confidence intervals for the association between race/ethnicity and refusal to participate. The current study uses data only from MDACC. Results: Approximately 1,870 women were screened to determine eligibility. Of those, 914 were eligible, and 850 (93%) of the eligible women agreed to participate. The two most common reasons for refusal were lack of interest and being too overwhelmed with their breast cancer diagnoses, and 10% of the women stated that their families did not approve of their participation. Those refusing to participate were more likely to be African-American (p<0.001), late stage (p=0.01), and older age at diagnosis (p=0.02). Among African-American women, those refusing to participate were older (p=0.02), later stage at diagnosis (p=0.06), and less educated (p=0.06) compared to the participants. There were no significant differences between the Mexican-American participants and refusals. After adjusting for age and stage at diagnosis, African-American women were twice as likely to refuse participation as Mexican-Americans (OR=2.06, 95% CI: 1.11–3.83). Conclusions: Overall, African-American and Mexican-American women were willing to participate in an epidemiologic breast cancer study, and our participation rates were higher than those previously reported for both African-Americans and Hispanics. Studies have shown that participation rates are higher among women and among cases, two factors potentially contributing to our low refusal rates. It is also possible that our study of only minority women led to low refusal rates among African-American and Mexican-American women. However, African-American women were more than twice as likely to refuse participation, and we must identify which factors influence the decision of minority women to participate in medical research studies. Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):B19.