Participation of minorities in cancer research: The influence of structural, cultural, and linguistic factors

Overall, participation rates in cancer clinical trials are very low, rangin g from 3 to 20% of eligible participants. However, participation rates are especially low among the socially disadvantaged and racial/ethnic minority groups that have been historically underrepresented in clinical research. S tructural factors such as study duration, treatment or intervention schedul e, cost, time, followup visits, and side effects represent more of a barrie r to participation among these groups compared with white, non-Hispanics. A ttitudes, beliefs, perceptions, and knowledge regarding clinical research, and cultural characteristics of underrepresented minorities pose additional barriers to participation. This article focuses on the structural, cultura l, and linguistic factors that affect participation in clinical cancer rese arch for each major U.S. racial/ethnic group. Low socioeconomic status, spe aking a primary language other than English, differences in communication s tyles, mistrust of research and the medical system, fear, embarrassment, an d lack of knowledge about the origin of cancer appear to have a negative im pact on clinical cancer research participation rates. Much of the informati on about these factors comes from studies of cancer screening because littl e data is available on the factors that prevent and facilitate participatio n of minorities in clinical cancer trials specifically. Such research is ne eded, and, given the heterogeneity within and between minority populations, should occur in several different geographic settings and with as many dif ferent minority subpopulations as possible. (C) 2000 Elsevier Science Inc. All rights reserved.