Asking the right questions: Views on genetic variation research among black and white research participants

Abstract

Background: Genetic variation research (GVR) may raise concerns about misuse of information and discrimination. Seemingly contradictory positive views about GVR have also been reported. Objective: To dissect this inconsistency, our objectives were to: (1) explore open-ended views of GVR and (2) quantify views of and willingness to participate in GVR by race. Design: Cross-sectional study. Participants: 801 African-American and white prior participants in a case-control genetic epidemiology study of colon cancer risks (NCCCS). Measures: Qualitative measures evaluated responses to questions about good and bad things about GVR. Quantitative measures evaluated positive and negative perceptions, perceptions of discrimination, and likelihood of future participation by race. Results: Open-ended queries about GVR resulted in few "negative" responses. In closed-ended questions, however, African Americans were more likely to feel that such research would: result in higher insurance (41% vs. 30%, p∈=∈0.008), not benefit minorities (29% vs. 14%, p=<0.001), reinforce racism (32% vs. 20%, p∈=∈0.002), and use minorities as guinea pigs (27% vs. 6%, p∈