Community Engagement in US Biobanking: Multiplicity of Meaning and Method

• Published in: Community genetics 2014-01, Vol.17 (2), p.84-94
• Main Authors: Haldeman, K.M., Cadigan, R.J., Davis, A., Goldenberg, A., Henderson, G.E., Lassiter, D., Reavely, E.
• Format: Article
• Language: English
• Subjects: Biological Specimen Banks - ethics; Biological Specimen Banks - trends; Communication; Community involvement; Community-Institutional Relations - legislation & jurisprudence; Goals; Humans; Interviews as Topic; Job Satisfaction; Living Donors; Original Paper; Original Papers; Telephone; Translational Medical Research; United States
• ISSN: 1662-4246; 1662-8063
• DOI: 10.1159/000357958

Background/Aims: Efforts to improve individual and population health increasingly rely on large-scale collections of human biological specimens and associated data. Such collections or ‘biobanks' are hailed as valuable resources for facilitating translational biomedical research. However, biobanks also raise important ethical considerations, such as whether, how and why biobanks might engage with those who contributed specimens. This paper examines perceptions and practices of community engagement (CE) among individuals who operate 6 diverse biobanks in the US. Methods: Twenty-four people from a diverse group of 6 biobanks were interviewed in-person or via telephone from March to July 2011. Interview transcripts were coded and analyzed for common themes. Results: Emergent themes include how biobank personnel understand ‘community' and CE as it pertains to biobank operations, information regarding the diversity of practices of CE, and the reasons why biobanks conduct CE. Conclusion: Despite recommendations from federal agencies to conduct CE, the interpretation of CE varies widely among biobank employees, ultimately affecting how CE is practiced and what goals are achieved.