By Megan A. Allyse, Jennifer B. McCormick & Richard R. Sharp Pages: 1-3
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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