Unexpected findings in the exploration of African American underrepresentation in biospecimen collection and biobanks.

Racial/ethnic minorities are underrepresented in current biobanking programs. The current study utilized community-based participatory research to identify motivating factors and barriers that affect older African Americans' willingness to donate biospecimens. The standardized phone survey was administered to 78 African Americans who are 55 years old or older and live in the metropolitan Detroit area to assess their overall willingness to donate biospecimens and what factors were associated with it. The majority of the participants were willing to donate biospecimens, along with their personal information, for medical research and indicated that they did donate biospecimens when they were asked. However, African Americans were rarely asked to participate in biobanking programs. Furthermore, African Americans were not as concerned with research exploitation or as mistrusting of medical researchers as previously thought by the medical researchers. Even if African Americans were concerned over potential research exploitation or mistrust of medical researchers, these concerns or mistrust did not translate into an actual unwillingness to participate in biobanking programs. Rather, transparency in medical research and biobanking programs was more important when predicting African Americans' willingness to donate biospecimens for medical research. The findings suggest that underrepresentation of African Americans in current biobanking programs may not be due to their willingness/unwillingness to participate in such programs but rather due to a failure of medical researchers to approach them. Additionally, researchers and clinicians should focus on increasing the transparency of medical research and biobanking programs rather than changing African Americans' potential negative attitudes toward them.

"It's up to you and God": understanding health behavior change in older African American survivors of colorectal cancer.

This study investigated the beliefs and attitudes of older African American colorectal cancer (CRC) survivors that may influence health behavior changes after treatment. Drawing from existing theories of health behavior change and cultural beliefs about health, a semi-structured interview guide was developed to elicit survivors' perspectives. Qualitative focus groups and interviews were conducted with 17 survivors identified through the Detroit Surveillance Epidemiology and End Results registry. Using verbatim transcripts from the sessions and NVivo software, thematic analysis was conducted to analyze patterns of responses. Transcripts were coded for seven categories (health behaviors, who/what motivates change, self-efficacy, fatalism, religion/spirituality, beliefs about cancer, race/ethnicity). Five themes emerged from the data (personal responsibility, resilience, desire for information, intentions to change, beliefs in divine control). Findings support the relevance of existing theories of health behavior change to older African American CRC survivors. Cultural considerations are suggested to improve interventions seeking to maximize changes in diet and exercise among this group of survivors.