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Registry and Biorepository Bulletin
Brought to you by Genetic Alliance BioBank
30 September 2010 Issue #7


Biobanking in the News

Biobanks are not limited to human samples. A French science vessel is on a voyage to collect samples and map climate change. A biobank is being created from this research that will include viruses, bacteria, and fish larvae, with more than 100 scientists involved in the project.

Read the article.

Community Engagement in BioBanking

In this excellent resource on biobanking, Dr. Barbara Koenig and her team discuss the process of deliberative community engagement and plans for a biobank at the Mayo Clinic. This is a great overview of the ethical, legal, social, and policy challenges of biobanking. Of particular interest are chapters about community perspectives, governance, and informed consent.

Read the article.

Advancing Rare Disease Research Materials

Materials from the January 2010 workshop, Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data, are now available. These include proceedings from the meeting published in Contemporary Clinical Trials, a letter to the editor from The Lancet, and an article from Time magazine.

Access the materials.

Genetic Alliance BioBank Webinars

Please join Kelly Edwards, Ph.D., and Susan Brown Trinidad, MA, both from University of Washington, on October 27 at noon EST for a webinar on biobank stewardship and governance. We will discuss timely issues, such as data-sharing, stewardship, privacy, and transparency in biobanking. We will also tackle import governance questions including: Who has access to data and samples? Who should have access to data and samples? How are results reported to participants? Did you miss our interactive question and answer session about registries and biobanks on September 1?

View the archived webinar.

Click here to register for upcoming Genetic Alliance Webinars.


Edited by Liz Horn, Ley Lacbawan, and Sharon Terry.

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