P571: The impact of consanguinity on birth outcomes: Implications for healthcare and genetic counseling practices in the United States
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 communitybased 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.
Authors
- Prince Adu (ORCID: https://orcid.org/0000-0002-3983-0875)
- Noor Al-Hashemi
Institutions
- Ohio University (US)
Publication Details
- Journal
- Genetics in Medicine Open
- Published
- 2025-01-01
- DOI
- https://doi.org/10.1016/j.gimo.2025.102414
- Primary Topic
- Hemoglobinopathies and Related Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00