Part II of the Genetic Alliance Interactive Guide

The Genetic Alliance BioBank

The Genetic Alliance BioBank was incorporated as a nonprofit in October 2003. Its offices are in Washington DC, and its laboratory facility is in Wisconsin. It offers a centralized, standardized setting for collection and archiving of specimens. It has high storage- and participant-protection standards, and researchers gain access to samples through the member organizations. Advocacy organizations retain control of the specimens banked at the Genetic Alliance BioBank.

The BioBank requires members to be nonprofits with professional advisory boards who agree to use BioBank-approved documents and follow BioBank protocols. Each member pays an entry fee and annual fee, and there are per-sample charges for storage and withdrawal. (These fees can be passed on to researchers, if groups wish.) The BioBank offers basic repository services now - DNA, tissue, and cell lines. Members groups are not required to make their specimens available for bank-wide research uses, but participation at that level will greatly enhance the value of the BioBank to the advocacy community as a whole.

BioBank members receive specimen kits, training and documentation, technical assistance as need, peer-to-peer mentoring, and database and data-collection support. Member organizations determine their recruitments strategies and administer informed consent. The BioBank distributes kits (with directions for return), extracts DNA, and archives samples. It then records the "deposits" in a database. Members authorize withdrawals for research projects they approve. The BioBank lab reports deposits and withdrawals to the BioBank office, which bills member organizations for activity.

The BioBank needs as many members early on as possible - the larger our initial pool, the smaller the investment per group, and the better the BioBank can reach out to more groups and prepare to provide more services.

Are you ready to learn more about the Genetic Alliance BioBank? Contact Sharon Terry.

» Getting Your Needs on Government and Legislative Agendas

Privacy Policy - Disclaimer - Funding
Maintained by the Genetic Alliance.
The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups.

Send feedback about the Interactive Guide.

SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!

AN INTERACTIVE GUIDE TO BUILDING ADVOCACY GROUPS
Part II
Part I Part II Assessment Structure Resources Support Education Research Advocacy Part III	The Genetic Alliance BioBank The Genetic Alliance BioBank was incorporated as a nonprofit in October 2003. Its offices are in Washington DC, and its laboratory facility is in Wisconsin. It offers a centralized, standardized setting for collection and archiving of specimens. It has high storage- and participant-protection standards, and researchers gain access to samples through the member organizations. Advocacy organizations retain control of the specimens banked at the Genetic Alliance BioBank. The BioBank requires members to be nonprofits with professional advisory boards who agree to use BioBank-approved documents and follow BioBank protocols. Each member pays an entry fee and annual fee, and there are per-sample charges for storage and withdrawal. (These fees can be passed on to researchers, if groups wish.) The BioBank offers basic repository services now - DNA, tissue, and cell lines. Members groups are not required to make their specimens available for bank-wide research uses, but participation at that level will greatly enhance the value of the BioBank to the advocacy community as a whole. BioBank members receive specimen kits, training and documentation, technical assistance as need, peer-to-peer mentoring, and database and data-collection support. Member organizations determine their recruitments strategies and administer informed consent. The BioBank distributes kits (with directions for return), extracts DNA, and archives samples. It then records the "deposits" in a database. Members authorize withdrawals for research projects they approve. The BioBank lab reports deposits and withdrawals to the BioBank office, which bills member organizations for activity. The BioBank needs as many members early on as possible - the larger our initial pool, the smaller the investment per group, and the better the BioBank can reach out to more groups and prepare to provide more services. Are you ready to learn more about the Genetic Alliance BioBank? Contact Sharon Terry. » Getting Your Needs on Government and Legislative Agendas Privacy Policy - Disclaimer - Funding Maintained by the Genetic Alliance. The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups. Send feedback about the Interactive Guide. SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!	« Blood and Tissue Banks » Getting Your Needs on Government and Legislative Agendas