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Enhancing African American Participation in Biospecimens: A Case in Point for Pancreatic Cancer
Linda Behar-Horenstein1,2, Rueben C Warren3, V Wendy Setiawan4,2
1Colleges of Education, University of Florida, Gainesville, FL, USA.
Cancer Health Disparities
|July 23, 2021
Summary
African Americans face higher rates of pancreatic diseases. Improving biospecimen donation participation through education and transparency is crucial for health disparities research.
Area of Science:
- Pancreatology
- Genetics and Genomics
- Epidemiology
Background:
- Pancreatic diseases, including chronic pancreatitis, diabetes, and pancreatic cancer, disproportionately impact the African American community.
- Engaging the African American community in biospecimen research presents long-standing challenges.
Purpose of the Study:
- To assess African American representation in pancreas-related biobanks and data repositories.
- To identify barriers and facilitators for African American participation in biospecimen donation for research.
Main Methods:
- Survey of pancreas-related biobanks and data repositories.
- Analysis of African American donor representation in these resources.
- Review of historical factors influencing participation.
Main Results:
- African American representation varies across surveyed biobanks and databases; some reflect general population demographics, while others do not.
- Key barriers include medical mistrust, lack of transparency, fear, and poor understanding of biospecimen use.
- Educational interventions and accessible recruitment materials are suggested strategies.
Conclusions:
- Addressing historical mistrust and improving transparency are vital for increasing African American participation in biospecimen donation.
- Enhanced community engagement and education can improve representation in research, benefiting health disparities research for pancreatic diseases.
- Increased awareness of donation benefits can positively impact research outcomes for pancreatic cancer and other diseases affecting this population.
