Clinical research is meant to serve all communities. For this reason, the National Cancer Institute expects each cancer center to recruit participants in numbers that reflect the cancer prevalence in their service regions. However, many centers do not achieve this balance. The individual who obtains consent for participation often interacts most closely with potential subjects. We proposed that the ethnic, racial, and linguistic background of the consenter could meaningfully influence a person’s willingness to enroll. To test this, we conducted a mixed-methods study exploring how the cultural identity of the person obtaining consent might shape patients’ decisions about joining a clinical trial. Between January 2018 and February 2020, 205 women attending our breast clinic were approached in sequence; 181 completed the survey. Of these, 94 (52%) identified as Northern European, non-Hispanic White (NE White), and 87 (48%) as Women of Color (WOC) — including Asian, Black, Hispanic/Latina, and Native American participants. Clear statistical differences emerged regarding how important the consenter’s identity was in the decision to enroll. No NE White participant (0%, n = 0) considered the consenter’s race relevant, compared with 11% (n = 9) of WOC respondents (p = 0.0009). Similarly, none of the NE White group valued having a consenter “who looked like people in my community, ” while 12% (n = 10) of WOC respondents did (p = 0.0004). These outcomes indicate that the racial and ethnic background of the consenter can influence representation in clinical trials. Broader investigations are needed to determine whether this pattern applies elsewhere.
