Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community.

Abstract

The success of biobanking research relies on the willingness of the public to provide biological and sociological information, donate tissue samples, and complete psychosocial questionnaires. Medical advances made through biobanking research have limited reach if tissues are not obtained from a diverse sample of individuals. Within, we describe the process of transitioning a small group of Hispanic community members who met regularly into a more formal Hispanic Community Advisory Board (HCAB) for the Genotype-Tissue Expression (GTEx) project. The sole purpose of the HCAB was to provide input and feedback on GTEx and, specifically, how researchers can best address the concerns of the Hispanic community related to tissue donation. This initial purpose was adapted to be responsive to the HCAB's request to include educating others in the Hispanic community who were not a part of the advisory board about genomic biobanking. While HCAB members' knowledge of biobanking was limited, a strong need for culturally tailored information about the impact of biobanking medical discoveries and their potential benefit to the Hispanic community was expressed. The HCAB's feedback guided revisions to GTEx study documents to specifically address concerns about language use, clarity, and context including the need for consent forms to address cultural concerns and fears. HCAB members also collaborated on the development of a walk-through exhibition which provided a visual, narrative-based explanation of GTEx and the process of tissue donation for research and biobanking purposes. The HCAB demonstrated the value of including community participation in scientific research projects, for both scientists and lay communities, and underscored the importance of developing community engagement approaches that are adaptable and responsive to community needs. Our experience with the HCAB serves as exemplar for a unique paradigm of community inclusiveness and education in research.