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.

Community Stakeholders’ Perspectives on Introducing Human Papillomavirus Vaccination and Biobanking Evidence-Based Programs Within Medically Underserved Communities: A Community-Engaged Approach

“…20 Previous studies that trained community volunteers and public health professionals to deliver educational interventions in community settings highlight the positive effects on community members’ knowledge levels and HPV vaccination acceptance. 21–23 Findings from this study add to the literature by identifying further knowledge gaps and misconceptions within underserved communities and among program coordinators tasked with disseminating health information. Findings also support further training to address such knowledge gaps since increasing awareness and knowledge of the benefits of new medical approaches among community stakeholders can increase community buy-in and support for EBP.…”

Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India

“…Public meetings and community durbars were used to engage large numbers of people 48,51 . Bootcamp translation, workshops and citizen-expert panels honed general and specific publics' suggestions towards the governance of biobanking and genetic research, while citizens' reference panels and community advisory boards enabled active participation in the decision making process 42,43,45,48,52,64,66,69 . Bootcamp translation and citizen-expert panels aimed to create an interface between experts and publics, while citizen reference panels aimed to represent the views of a particular public participation within biobanking and genetic research has been situated on a continuum that ranges from increasing public awareness on particular aspects of science and technology (communication: low-level engagement); eliciting public opinion on controversial topics towards informing the governance of research (consultation: mid-level engagement); and actively incorporating public input into policy by establishing a dialogue between publics and scientists, policymakers, and other stakeholders (collaboration: high-level engagement) 13,21 .…”

“…In the United States, general and specific publics were consulted to understand the factors influencing participation in research for different communities 31-33,37,41,45,49,55,57,60,62,63,67 ; expectations with respect to data sharing 32,40,42,57,60, 63 and the return of research results 33,40,47,60,62 ; and views on the inclusion of children and pregnant women in biobanking and genetic studies 33, 55,62 . There was a focus on including the perceptions of minority groups like African-Americans, Hispanics, Alaska Natives and Native Americans, to inform the governance of biobanking and genetic research 31,33,40,45,54,55,57,60,67 . Engagement was also used as a tool to inform geneticists about the public understanding of relevant science 50 and translate the science of biobanking into patient-centered language 42 .…”

“…Reported findings highlighted the need to increase general awareness about biobanking and genetic research, specifically in minority groups 32,40,42,44,45,49,50,[52][53][54][55]59,63,70 . The desire of participants to be recognised as partners in the research process, whose opinions and experiences were to be respected, was evident from the views of general and specific publics 35,37,46,48,60,64,66,67 .…”

Integrating Genomic Screening into Primary Care: Provider Experiences Caring for Latino Patients at a Community-Based Health Center

“… 26 , 27 Addressing these and other health inequities in genetic medicine requires that we consider how best to make the potential benefits of precision medicine available to under-resourced communities. 11 , 28 , 29 This sentiment was evident in our interactions with PCPs, all of whom expressed a strong interest in advancing community-based health by promoting genomic research, despite limited evidence of clinical utility in comparable settings and full awareness of the many challenges associated with the clinical management of patients who received a medically actionable result. A consistent sentiment among PCPs was enthusiasm for this research in genomic screening to learn more and consider how precision medicine might benefit their patients in the future.…”