Evaluation of Researcher Knowledge and Attitudes of Community Engagement in Genomics Research and Biobanking
Ethical Legal Social Issues (ELSI) Public Health and Policy
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Introduction:
Biobanks are important resources for supporting and advancing biomedical research by providing clinical data and biospecimens. The success of research through biobanks depends upon several factors, and exploration of areas such as awareness, utilization, and community engagement are crucial to maintaining and improving biobank operations. Equitable representation of minority groups has proven to be a challenge for biobanks. Community-based initiatives are potential strategies to address these challenges and enhance stakeholder engagement. There are reports of improved biobank awareness, increased trust, and participation among underrepresented communities when greater community involvement has been employed. Additionally, varying interpretation of community engagement affects how it is practiced and what goals are achieved. Furthermore, there are differences in biobank engagement according to the researcher’s discipline. For example, in an internal review of our regional hospital system’s biobank, we found that community-based researchers were the smallest group (18%) in comparison to basic science researchers (24%) and translational researchers (36.5%). This study explores knowledge and attitudes around community engagement and community-based research through biobanks and identifies barriers and facilitators.
Methods:
The Penn Medicine BioBank (PMBB) is a large academic, health system-based biobank available to researchers at the University of Pennsylvania (UPenn). We interviewed 20 individuals, including staff, faculty, and trainees at UPenn, who have or have not previously used the PMBB. Participants were from various research focuses such as basic science, clinical, community-based, and health policy research. The interview guide was designed to include questions applicable to all participants, with additional targeted questions for PMBB users and non-user groups. The questionnaire addressed the following aspects: awareness of the PMBB, rationale for PMBB use or disuse, attitudes, and perspectives on community engagement in genomics research, current concerns, and feedback for change. A qualitative analysis of transcripts was conducted using inductive and deductive coding approaches. Thematic elements are annotated and presented as importance, consensus, and facilitation of community engaged biobank research.
Results:
Participants presented with varying understandings of community engagement in the biobanking context. Most participants affirmed that community-based approaches have helpful, practical applications in genomics research. Effective community engagement with underrepresented populations was highlighted as very important, though many felt it could be a higher priority. Historical mistrust and cultural and social differences were recognized as significant barriers to equitable representation. Costs and logistical factors were the most commonly cited obstacles to engagement with these groups. A few participants acknowledged the responsibility to conduct meaningful engagement. Considering how engagement can be practiced on a large scale, we pondered how much responsibility rests on biobanks compared to other stakeholders.
Conclusion:
This study endorsed genomics research and biobanking as having unique challenges that may be alleviated with consideration of community engagement initiatives. Additional support is necessary for researchers to understand better how this engagement can be integrated into biobank operations. Determination of stakeholder roles and responsibilities in effective community engagement could direct how it is implemented within biobanks and maximize impact.
Biobanks are important resources for supporting and advancing biomedical research by providing clinical data and biospecimens. The success of research through biobanks depends upon several factors, and exploration of areas such as awareness, utilization, and community engagement are crucial to maintaining and improving biobank operations. Equitable representation of minority groups has proven to be a challenge for biobanks. Community-based initiatives are potential strategies to address these challenges and enhance stakeholder engagement. There are reports of improved biobank awareness, increased trust, and participation among underrepresented communities when greater community involvement has been employed. Additionally, varying interpretation of community engagement affects how it is practiced and what goals are achieved. Furthermore, there are differences in biobank engagement according to the researcher’s discipline. For example, in an internal review of our regional hospital system’s biobank, we found that community-based researchers were the smallest group (18%) in comparison to basic science researchers (24%) and translational researchers (36.5%). This study explores knowledge and attitudes around community engagement and community-based research through biobanks and identifies barriers and facilitators.
Methods:
The Penn Medicine BioBank (PMBB) is a large academic, health system-based biobank available to researchers at the University of Pennsylvania (UPenn). We interviewed 20 individuals, including staff, faculty, and trainees at UPenn, who have or have not previously used the PMBB. Participants were from various research focuses such as basic science, clinical, community-based, and health policy research. The interview guide was designed to include questions applicable to all participants, with additional targeted questions for PMBB users and non-user groups. The questionnaire addressed the following aspects: awareness of the PMBB, rationale for PMBB use or disuse, attitudes, and perspectives on community engagement in genomics research, current concerns, and feedback for change. A qualitative analysis of transcripts was conducted using inductive and deductive coding approaches. Thematic elements are annotated and presented as importance, consensus, and facilitation of community engaged biobank research.
Results:
Participants presented with varying understandings of community engagement in the biobanking context. Most participants affirmed that community-based approaches have helpful, practical applications in genomics research. Effective community engagement with underrepresented populations was highlighted as very important, though many felt it could be a higher priority. Historical mistrust and cultural and social differences were recognized as significant barriers to equitable representation. Costs and logistical factors were the most commonly cited obstacles to engagement with these groups. A few participants acknowledged the responsibility to conduct meaningful engagement. Considering how engagement can be practiced on a large scale, we pondered how much responsibility rests on biobanks compared to other stakeholders.
Conclusion:
This study endorsed genomics research and biobanking as having unique challenges that may be alleviated with consideration of community engagement initiatives. Additional support is necessary for researchers to understand better how this engagement can be integrated into biobank operations. Determination of stakeholder roles and responsibilities in effective community engagement could direct how it is implemented within biobanks and maximize impact.
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