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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry and BioBank
27 May 2011 Issue #15
ISBER 2011 Meeting

The ISBER 2011 meeting, Impact and Public Benefits of Repositories, was held May 15-18 in Arlington, Virginia, bringing together experts in biobanking from all over the world. There was robust discussion surrounding biobank governance and the return of research results to participants. There is an emerging consensus that primary researchers may have some duties to return incidental finding and individual research results. There is less consensus on which ones, and who is responsible for returning results. There are logistical challenges of how to return results, and concerns that only reliable and verifiable results are returned. There was agreement that returning aggregate results and increasing communication between researchers and participants may be appropriate next steps. Biobanks should bear some responsibility for returning results, but will need to work in partnership with others. This is an area of great interest to many, and the discussion is ongoing.

Genetic Alliance Annual Conference

There is still time to register for the Genetic Alliance 25th Anniversary Annual Conference, June 23-26, 2011. Advocates and community leaders, health and industry professionals, policymakers, academicians, and more will join together to engage in cutting-edge discourse, brainstorming, workshops, and networking. A specialized Registry and Biobank Track will focus on issues of organization, trust, and governance, and will include the Genetic Alliance Registry and Biobank Boot Camp.

Register Now!

IRB Protocol Guidance

Institutional Review Board (IRB) approval is usually required for oversight of the collection, storage, and secondary use of data and samples. An excellent workshop at the ISBER 2011 meeting, Putting it all Together...Essential Components of a Biospecimen-related Protocol Workshop, provided an overview of information that should be included in the research protocol submitted to the IRB. Highlights from this discussion have been summarized in our Week 20 Biobank tip.

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The Need for Disease-based Registries

In a recent interview by Orphanews Europe, Dr. Carla E. M. Hollak discussed the importance of post-marketing drug registries and their unique characteristics. Challenges include fragmentation of data and the lack of collaboration between centers. Dr. Hollak suggests that disease registries may be more advantageous than drug registries for the rare disease community.

Read the interview.

Bio-PIN Labeling

Scientists have developed a new method to anonymously label biobank samples that may help address some of the ethical, legal, and societal issues in biobanking. Samples and data would be collected anonymously and labeled with a Bio-PIN based on individual biological characteristics, not identifiers. This new method is expected to enhance public trust, and two-way communication between the biobank and the donor are possible. Challenges may arise as the sample donor is responsible for contacting the biobank to update information.