Assessing Barriers to Participation in Tissue Research
Biospecimens are materials taken from the human body – such as tissue, blood, plasma and urine. They contain DNA, proteins and other molecules important for understanding disease progression. When patients have a biopsy, surgery or other procedure and they give permission, a small amount of the specimen removed can be stored and used for later research.
Over the past several years, the National Cancer Institute has undertaken an intensive process to establish guiding principles for the collection, storage, retrieval and distribution of biospecimens for research. Biorepositories, or biobanks, are libraries where biospecimens are stored and made available for scientists to study for clinical or research purposes. A high priority for biorepositories is to protect the privacy and sanctity of personal and medical information. (Click here for more information about cancer biospecimens and biorepositories.)
Biorepositories have the potential to improve treatments and therapies for a number of conditions, many of which are more prevalent among minorities and underserved populations. Minorities, compared to nonminority groups, however, have lower participation rates in medical research, which includes biospecimen collection for research purposes. Broad inclusion of diverse people in medical research is essential to assuring that emerging care standards for prevention, diagnosis and treatment are equally effective for all sectors of society. Therefore, we must understand reasons for nonenrollment in biorespositories and address them in order to increase minority participation in research.
Over several years, the PECaD Prostate Cancer Community Partnership has worked to identify reasons for prostate cancer disparities in the local community and to develop strategies to address them. The partnership identified a need to improve the participation rates of minorities in biorepositories for several reasons, including:
- The immense racial disparity observed in prostate cancer incidence (new diagnosis) and mortality (death) rates
- An increased interest among scientists and clinicians for high-quality prostate cancer biorepositories
- The potential such repositories can have on understanding prostate cancer disparities
For this project, the partnership collaborates with clinical researchers to identify barriers to minority participation and develop strategies to increase minority participation in an existing prostate cancer study at the Siteman Cancer Center that involved the collection of biospecimens for a prostate cancer-related biorepository. The prostate cancer study had experienced difficulty recruiting African-American men.
Using a community-based participatory research (CBPR) approach, the partnership worked with the study team to develop a study to identify barriers and challenges related to the recruitment of African-American men for biospecimen collection and to identify strategies to improve current recruitment methods.
The team completed 15 focus groups with 72 African-American men. A focus group analysis looked at the demographic, social and health background of the sample. The analysis revealed that the men’s thoughts on participation in biorepository research fall into three core themes; results will be published soon.
The project team also has written a methodology paper for peer review that describes the recruitment process, challenges and lessons learned. This article will add to the growing body of literature on engagement and recruitment of ethnic minority groups, specifically African Americans, in health studies.
Moving forward, the project team will continue to share its expertise on biorepository recruitment across programs and clinical groups at Washington University School of Medicine and research studies within Siteman.
National Cancer Institute at the National Institutes of Health (U54 CA153460)
Bettina Drake, PhD, MPH (Primary Investigator, Washington University)
Sarah Gehlert, PhD (Co-Investigator, Washington University)
Vetta Sanders Thompson (Co-Investigator, Washington University)
Graham Colditz, MD, DrPH (Co-Investigator, Washington University)
Prostate Cancer Community Partnership (Collaborators)
Kimberly Carter, PhD (Research Assistant, Washington University)