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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance Registry and BioBank
29 April 2011 Issue #14
Sage Commons Congress

Sage Commons Congress, an initiative of Sage Bionetworks, was held April 15-16 in San Francisco, CA. This Congress discussed the challenges of science and healthcare from the researcher and patient perspectives, and highlighted the advancements of the past year. Attendees then divided into five working groups to develop specific action plans and outcomes in the areas of engaging the public, building disease maps, the Federation, enabling data sharing, and developing computing platforms. Only by working together and engaging all stakeholders, including citizens scientists, will we be able to advance science and bring better treatments to the individuals who need them. Various blogs responded to the discussion, including Luke Timmerman’s Open Source Biology Deserves a Shot, and Todd Smith’s Scientists Must Change Their Culture to Bring About Better Healthcare

View the presentations.

Registry and BioBank Toolbox

The GARB Toolbox is an interactive map designed to organize and navigate all of Genetic Alliance Registry and BioBank’s tools and resources. These resources, including publications, training and mentoring tools, videos, webinars, web pages, and worksheets, are grouped based on overarching themes or questions that often arise when establishing or improving a registry or biobank. With the help of the Toolbox, we hope to guide you to all of our different resources for registries and biobanks.

Survey Opportunities

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Upcoming Conferences

The International Society for Biological and Environmental Repositories (ISBER) will host its 2011 Annual Meeting: Impact and Public Benefits of Biorepositories, May 15-18, 2011 in Arlington, VA. Session topics include the impact of biorepositories on clinical trials and prospective studies, innovative technologies, valuing the benefit of biorepositories to stakeholders, and biorepository governance models and returning research results.

The University of Minnesota Consortium on Law and Values in Health, Environment, and the Life Sciences presents Should We Return Individual Research Results and Incidental Findings from Genomic Biobanks and Archives, May 9, 2011 in Bethesda, MD. This conference will address policies and best practices on returning both incidental findings and individual research results from biobanks that may have importance for the donor.


On July 8-9, 2010, the Office of Biorepositories and Biospecimen Research, the National Cancer Institute, and the National Institutes of Health hosted the Workshop on Release of Research Results to Participants in Biospecimen Studies. Due to the lack of consistent policy on the issue, this workshop aimed to create best practices on the sharing of individual research results. Workshop attendees did not reach a consensus, however they did recognize that returning individual findings could be beneficial.

The National Center for Biotechnology Information (NCBI) has created a YouTube Channel to provide access to biomedical and genomic information. The channel features interviews, tutorials, lectures, and videos from meetings and events. With the help of this channel, NCBI can provide researchers with better tools to advance understanding of the role of genetics in health and disease.