Seen, Heard, and Still Missing: Understanding Clinical Trial Nonparticipation Among Women of Color

To examine structural, informational, and cultural barriers to clinical trial participation among women of color (WOC), with emphasis on adolescents and young adults (AYAs), through a community-partnered study to illuminate persistent challenges and generate actionable strategies through community-driven research.

In partnership with For the Breast of Us, a national advocacy organization for WOC affected by breast cancer, we conducted a sequential exploratory mixed-methods study. In-depth interviews (n = 59) informed a national online survey (n = 421) assessing trial perceptions, knowledge, and participation among WOC across the United States, both with and without a breast cancer diagnosis, the majority of whom were AYAs.

Five themes emerged distrust and historical harms; logistical and structural barriers; cultural relevance and representation; fear and silence; and access to health care and information. Quantitatively, WOC were less likely than White women to have discussed trials with a provider (36% vs. 58%, p < 0.05), to know how to enroll (64% vs. 41%, p < 0.01), and to perceive trials as "not for people like me" (79% vs. 47%, p < 0.01). Age-stratified analyses further showed that women ages 19-30 reported lower clinical trial knowledge and greater informational, trust-related, and practical barriers than older participants.

Barriers to trial participation are structurally embedded and racially patterned, with age-stratified findings suggesting distinct informational, trust-related, and practical barriers among younger women. Transforming who clinical trials are for begins by transforming how they are built.