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American Journal of Bioethics.

Prudentia Populo: Involving the Community in Biobank Governance

In defending broad consent, Grady and colleagues (2015) stress the need for additional biobank governance structures, such as sample oversight committees that include community representation. The desirability of community engagement in biobank governance is easily understandable. Involving participants in the oversight of samples and data increases the transparency of biomedical research, fosters trust relationships between donors and researchers, and provides valuable feedback on areas of research that may be at odds with the values of research participants (O’Brien 2009; Racine 2003; Myskja 2007). It is easy to see, for instance, how the involvement of community representatives in research on the stored DNA samples of members of the Havasupai Tribe might have avoided the conduct of research that ultimately led to considerable anguish on the part of the Havasupai, professional embarrassment on the part of researchers, and a large financial settlement on the part of the university involved (Drabiak-Syed 2010). […]

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Volume 15, Issue 9
September 2015

Target Articles.

Patient Perspectives on the Learning Health System: The Importance of Trust and Shared Decision Making Maureen Kelley, Cyan James, Stephanie Alessi Kraft, Diane Korngiebel, Isabelle Wijangco, Emily Rosenthal, Steven Joffe, Mildred K. Cho, Benjamin Wilfond & Sandra Soo-Jin Lee
Broad Consent for Research With Biological Samples: Workshop Conclusions Christine Grady, Lisa Eckstein, Ben Berkman, Dan Brock, Robert Cook-Deegan, Stephanie M. Fullerton, Hank Greely, Mats G. Hansson, Sara Hull, Scott Kim, Bernie Lo, Rebecca Pentz, Laura Rodriguez, Carol Weil, Benjamin S. Wilfond & David Wendler


Prudentia Populo: Involving the Community in Biobank Governance Megan A. Allyse, Jennifer B. McCormick & Richard R. Sharp