Vol. 15 No. 9 | September 2015

Vol. 15 No. 9 | September 2015

ISBN: 1526-5161

editorial.

Prudentia Populo: Involving the Community in Biobank Governance

Megan A. Allyse, Jennifer B. McCormick & Richard R. Sharp

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...

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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

We conducted focus groups to assess patient attitudes toward research on medical practices in the context of usual care. We found that patients focus on the implications of this research for their relationship with and trust in their physicians. Patients view research on medical practices as separate from usual care, demanding dissemination of information and in most cases, individual consent. Pat...

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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

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health (NIH) Clinical Center’s Department of Bioethics held a workshop to consider the ethical acceptability of addre...

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