Genetic Alliance BioBank was established in 2003, built on the first ever participant owned and managed registry and biobank which was founded in 1995. GAB arose from a collaborative effort of six disease advocacy organizations (DAO) (common and rare diseases) that were in need of a customizable, cooperative, model to store clinical data and biological samples, in order to reduce costs and increase capacity. These DAO set up a shared infrastructure, secured vendors, negotiated terms and created a standard, but customizable, protocol. In addition, Genetic Alliance created its own Institutional Review Board and it reviewed all of the template documents: membership agreements, consents, material transfer agreements, etc. We understood then, as we do now, that the act of creating a research infrastructure does not require institutional review board approval, but we wanted to validate all aspects of this novel system.
Much has changed since 2003 when this was a very innovative activity: in the intervening years, costs for storage and information technology (IT) declined, and we are now capable of far more than the rudimentary paper and early digital systems had to offer. GAB has modified its format, vendors, and services over the years, all leading up to our current offering: a comprehensive system and resource.
Genetic Alliance offers registry and biobanking services a la carte: this means that you may chose to use one or the other, or both. This page describes our biobanking option only, but for information on out registry service, please contact us and visit our PEER page.
BioBanking
Genetic Alliance biobanking services are offered to any nonprofit. We bargain with vendors for reduced rates for our members. We work as a cooperative – essentially sharing infrastructure, managing our own collections independently through a web online interface (LIM system), and adding services as the various member groups come to need them. This is especially useful to advocacy organizations and any others who have a need for centralized banking for long tail collections. Upon ordering, our vendors send kits (for whichever sample type is being collected - blood, buccal swab, saliva, urine, etc.), to participating, individual donors. They also create large batches of kits for events.
Our model and arrangements allow us to offer exceptional and cost-effective biorepository services. If you are interested in joining our BioBank and would like to receive more information on our currently available services and pricing, send an email to
biobank@geneticalliance.orgBioBank Fees
Members will pay a one-time $1000 set-up fee from the 1st of the month when they join the BioBank. Additionally, members will pay the one-time Genetic Alliance IRB review fee of $500 or receive approval for their biobanking protocol from another independent IRB. Members will also be charged $750/quarter, billed in advance of the quarter.
Contact Us
For all other questions or inquiries, please
contact us here.
