Leading Biobanking Projects & Institutions
- The Department of Veterans Affairs plans a genetic database from potentially millions of VA patients, launching into profound legal, ethical and privacy debates to claim a leading role in genetic medicine. The VA intends to collect the first 100,000 samples in fiscal 2007, which begins in October, and foresees a database as large as veterans will allow.
- Launched in March, 2006, the UK Biobank aims to collect DNA samples and histories from 500,000 patients, ages 40-69, and track their health over time. Participants’ names and addresses will be kept confidential, but data will be made available to applicants whose research will first be reviewed by a committee. A BBC report called the UK Biobank "the largest ever study into the genetic and environmental causes of disease."
- Karolinska Institutet, the Nobel-prize-awarding research center in Stockholm, Sweden announced the KI Biobank in November, 2004. Part of its mission is to help establish biobank informatics, which “involves defining, structuring and standardizing the vast information associated to collected samples.” At the core of the project is a Biobank Information Management System (BIMS), designed to enhance the scientific utility of the biobank. Through this system, genotype and phenotype data will be linked in a standardized fashion, and be accessed by research groups. KI Biobank is also part of The Swedish National Biobank Program.
- The National Cancer Institute's Office of Biorepositories and Biospecimen Research (OBBR) was established in 2005 “in recognition of the critical role that biospecimens play in cancer research.” The OBBR is working to develop a common biorepository infrastructure that promotes resource sharing and team science, in order to facilitate multi-institutional, high throughput genomic and proteomic studies. OBBR’s objectives include: establishing biobanking as a new area of research, developing guidelines to harmonize policies and procedures of NCI-supported biorepositories, coordinating with the international biobanking community, and facilitating the establishment of a National Biospecimen Network (NBN). The Prostate SPORE program is the first pilot for the NBN.
- FasterCures.org announced in November, 2005 it will build and maintain BioBank Central, a Web-based portal that will connect all the constituencies in the global biobank world: researchers; academic medical centers; biobank managers; tool and product providers; patients; ethicists; government agencies; and the public. The portals objectives: to encourage the donation of specimen; educate the public about the advancements that could come from the study of biological materials; accelerate the discovery and development of new diagnostics and therapeutics; enable the biorepository community to collaborate on implementing best practices and promising approaches. Sponsors include IBM, Invitrogen, Affymetrix, and Bioaccelerate.
- Seven genetic advocacy organizations established the Genetic Alliance BioBank in October, 2003 as a repository for the standardized collection, storage and distribution of biological samples and clinical data for research purposes. This novel, advocacy-owned and -managed repository focuses and accelerates research, providing infrastructure for many advocacy groups to build a valuable resource.
- The ProCURE Québec Prostate Cancer Biobank “aims to collect, process, and store the highest quality biological materials (prostate tissue, blood and urine) and related information from men with prostate cancer and those at risk over time, to make available for the widest possible range of clinically meaningful prostate cancer research. The goal of the Biobank is to increase the quality of patient care and accelerate the impact of research on such care. It will implement the highest standards of biological banking to provide outstanding clinical, medical, demographic and analytic data through the use of upfront broad consent forms.”
- The Genographic Project is a five-year effort to understand the human journey—where we came from and how we got to where we live today. Launched in April, 2005 as a collaboration between National Geographic and IBM, the project seeks to trace mankind’s migration through DNA analysis. More than 137,000 public participants around the globe have contributed their DNA via packaged kits. Field scientists also aim to collect more than 100,000 DNA samples from 10 remote and isolated indigenous populations on six continents. While not precisely a biobanking project, the work may inform other efforts. The genetic propensity for certain diseases in different “haplogroups,” population segments of the human ancestry, may lead to new ways to prevent and treat disease.
- Founded in 2000, the International Society for Biological and Environmental Repositories, ISBER, strives to provide "information and guidance on the safe and effective management of specimen collections. One of the group’s recent efforts was to develop Best Practices for Human Tissue Repositories, which was published in its official publication Cell Preservation Technology. ISBER is a division of the American Society for Investigative Pathology.
- The American Association of Tissue Banks (AATB) is a scientific, not-for-profit, peer group organization founded in 1976 to facilitate the provision of transplantable cells and tissues of uniform high quality in quantities sufficient to meet national needs.