An invitation for optimal inclusivity: Investing in communities to advance equity in biomedical research and cancer care

Rapid advances in translational and population health, computational biology, and next-generation genome sequencing have transformed discoveries in cancer prevention and disease treatment and made biospecimen-based science an established part of the cancer care landscape. Emanating from these discoveries are a multiplicity of ethical-legal, organizational, regulatory systems, and knowledge-related opportunities that obligate researchers to identify and understand factors with which to optimize diversity in research. However, daunting evidence persists relative to the unacceptable disparities and underrepresentation of racial/ethnic minority groups in biospecimen donation across all cancer types. Spratt et al highlighted the real implications of the lack of diversity in cancer-related biorepositories when there are insufficient samples for detecting mutations that occur at frequency rates as high as 10% for racial/ethnic minorities, yet there are sufficient samples available for white individuals to detect mutations at frequency rates as low as 5%. In this issue of Cancer, Barrett et al examined factors associated with opportunity, actual participation, and willingness to participate in biomedical research broadly, and those factors specifically related to clinical trials and biospecimen donation among a diverse, multilingual, community-based sample across 3 geographic regions: Buffalo, New York; Durham, North Carolina; and San Francisco, California. The purpose of this editorial was to synthesize key findings and discuss the implications of the study and its generalizability beyond the context of the 3 National Cancer Institute (NCI)– designated cancer centers in which the research was conducted. Lessons learned can inform a broader scope for improving diversity in cancer research and care delivery across other NCI-designated cancer centers and non-NCI community cancer centers in which the majority of oncologic care is delivered, and in which resource levels may differ drastically. Using a convenience sample of 4343 participants, Barrett et al administered language-specific survey items that were self-administered or administered by an interviewer through web-based surveys, in-person invitations at community events, or field surveys using tablet devices. The pooled sample in their study was 34% white, 28% black or African American, 19% Latino or Hispanic, 14% Asian, and 5% other, with approximately two-thirds of the sample participants aged <55 years of age and 63% being female. The findings of the study by Barrett et al indicated that African American individuals, Hispanic/Latino individuals, and members of other racial/ethnic minority groups were more likely to be offered opportunities to participate in biomedical research compared with white individuals. The authors attributed their ability to reach diverse populations to their well-established community partnerships and long-standing community engagement around biomedical research. Nevertheless, the richness offered by the nonrandom, community-based sampling technique and wide-ranging population approaches may pose limitations with regard to generalizability. In addition, a bias may have been introduced, namely that the findings may not be representative of respective study site catchment areas. Although local tailoring is important, it can limit the consistent application and transferability of robust best practices. Nevertheless, the pooled sample and oversampling of minorities enhanced the diversity and therefore strengthened the study by Barrett et al. Despite the findings of Barrett et al demonstrating high receptivity of biospecimen donation by the public, the question of whether to participate and donate biospecimens was asked at only 2 study sites. Moreover, none of the sites actually collected biospecimens. Therefore, the extant clinical trial enterprise must be broadened to include actual participation and/or donation. The results from Barrett et al have illustrated the persistent dichotomy between asking people about their willingness to donate biospecimens and the “actualization” of having a real opportunity to donate.