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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry & BioBank
November 25, 2011 Issue #21
Banking on Trust

There is great potential for improved human health through the use of biobanks. However, technical, institutional, ethical, and regulatory challenges have prevented the full realization of the benefits of biobanking. In Banking on Trust: The Future of Research with Human Biological Materials, FasterCures summarizes the barriers in the field of biobanking, offers case studies to demonstrate how to address these challenges, and provides eight principles to help advance the biobanking field. Ultimately, FasterCures suggests that building a foundation of trust among stakeholders is essential to achieving success in biobanking. Genetic Alliance Registry & BioBank is presented as a “patient-driven approach for ownership and trust.”

Evolving Models of Trust

At Genetic Alliance’s Annual Conference Beyond De-Identification: The Care and Feeding of Trust Relationships in Biobanking session, presenters discussed the importance of building trust between biobanks, donors, and researchers. Barbara Koenig, then Professor of Biomedical Ethics & Medicine at the Mayo Clinic College of Medicine, suggested moving away from informed consent and de-identification of samples, as these practices do not prepare participants for future contingencies. She advocated for governance models based on ongoing community governance, deliberative discussions, and stewardship relationships. Citing an anecdote from a recent paper by Heather Walmsley on deliberative discussions in biobanking, Dr. Koenig argued that community discussions could change people’s attitudes and build trust. Pearl O’Rourke, Director of Human Research Affairs at Partners HealthCare Systems, explained why innovations are important in biobanking trust relationships: the public is often uncomfortable with aspects of research, and the current system of regulations does not promote transparency. She called for increased education and engagement to help prioritize between the sometimes-competing goals of biomedical research and individual rights. Liz Horn, Director of Genetic Alliance Registry & BioBank, highlighted the issues in trust between biobanks and researchers. She said that biobanks should increase transparency in scientific protocols, establish clear data and sample access policies, and encourage those who are publishing to acknowledge biobanks in their publications. Joann Boughman, Executive Vice President of ASHG, moderated a lively question and answer session, including a debate surrounding compensation for tissue samples and the viability of opt-out policies for discarded tissue research.

NCI Releases Revised Best Practices

The National Cancer Institute (NCI) announced the release of revised NCI Best Practices for Biospecimen Resources. Originally released in 2007, this document identifies guiding principles defining state-of-the-science practices for biospecimen resources, promoting biospecimen and data quality, and supporting adherence to ethical and legal principles. The revised version incorporates more current and detailed recommendations, and responds to comments received from community stakeholders. A draft version of the revised document was posted online for public comment, and all the input received was considered in the final version of the document.

Biopreservation Core Resource

Effective methods of processing, preservation, and storage are critical to research on and clinical use of biospecimens. University of Minnesota Biopreservation Core Resource (BioCoR) aims at providing a unique resource for the biospecimen community by serving to improve the quality of biospecimens available for biomedical research and clinical use by advancing the science, technology, and practice of preservation. BioCoR has a number of resources focused on service, research, and education/training. BioCoR is currently signing up members, and projects are expected to begin in 2012.

Upcoming Webinars

The NIH Biospecimens Interest Group will meet on November 29 at 1:00 PM EST in the Lipsett Amphitheater, Building 10 (NIH Clinical Center). Presentations include: 1) Overcoming Barriers and Identifying Opportunities to Collecting High Quality Human Tissues: Findings of the Neurobiobank Workgroup, 2) Rare Disorders Collected and Stored at the NICHD Brain and Tissue Bank for Developmental Disorders, and 3) Clinical Biobanking: The Foundation for Personalized Medicine. The presentation will be broadcast live.

Genetic Alliance is hosting a webinar, Demystifying the IRB, on December 7 at 12:00 PM EST. This webinar is designed to give practical strategies for working in partnership with your IRB, including engaging your IRB early and often, writing informative research protocols, managing and assessing risk, and understanding relevant policy developments in the US. Presenters include Marianna Bledsoe, Liz Horn, and Susan Brown Trinidad.

Upcoming Meetings

ISBER (International Society for Biological and Environmental Repositories) is now accepting abstracts for its 2012 Annual Meeting, May 15-18, in Vancouver, BC. The abstract submission deadline is December 15, 2011.

5th Annual Biospecimen Research Network (BRN) Symposium is now accepting abstracts for its 2012 meeting, February 22-23, in Bethesda, MD. The abstract submission deadline is January 11, 2012.