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.
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Acknowledgements
The ELSI project would like the acknowledge the work of the GTEx OPO partners: Gift of Life in Philadelphia, PA; Center for Organ Recovery and Education in Pittsburgh, PA; LifeNet Health in Virginia Beach, VA; Washington Regional Transplant Center in Washington, DC; and LifeGift in Houston, TX. The authors would also like to recognize the family decision makers who participated in the ELSI project. Special thanks to the members of the GTEx Hispanic Community Advisory Board: Liliana Castillo, Lydia English, Maria Espiritu, Graciela Gomez, Jaime Jaime, Marianela Macedo, Juliana Moreno, Emperatriz Navarete, Vivian Robles, Maria Sanchez, and Sandra Torres.
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This work was supported by the National Institutes of Health (HHSN261200800001E—Leidos Prime contract with NCI) and the National Disease Research Interchange (10XS170).
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The ELSI sub-study protocol, including engagement of the CABs, was approved by the Institutional Review Boards at Virginia Commonwealth University and Temple University.
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Mosavel, M., Barker, K.L., Gardiner, H.M. et al. Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community. J Community Genet 10, 395–406 (2019). https://doi.org/10.1007/s12687-018-0397-x
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DOI: https://doi.org/10.1007/s12687-018-0397-x