Biobanks
About Bio/Data Repositories
Bio/Data repositories are an increasingly popular model for institutions with a high volume of biomedical research activities and sample collection. With proper consent, data and biological materials can be banked for prospective research. Tissue and blood samples that are routinely discarded after diagnostic and pathological testing can also be retained for study.
Institutions with electronic medical record systems can update de-identified data and may also link that to corresponding specimens in the repository.
USC has issued a Policy for Biorepositories (Aug 17, 2012).
Establishing a Bio/Data Repository
Biorepository Models Universal Prototypes
Issues to Consider (HHS)
How to Establish a Tissuebank (NCI)
Human Tissue/Specimen Banking Assessment & Recommendations (PRIM&R)
Biorepository & De-identification Open-source Software
Biorepository Ethics
Returning Individual Results and Incidental Findings (UMinn)
Biospecimen Best Practices
What Human Specimen Repositories Need to Tell Their IRBs (NCI)
Legal and Ethical Issues Related to Human Specimens and Associated Data (NIH)
Model Informed Consent Documents (NCI/NAPBC)
Consent Form Comparison Table
Informed Consent Templates for Genomic Research (NIH)
Coded Specimens Policy (OHRP)
Biospecimen Research Database (NCI)
Biorepository Legal Concerns
California Law and Biospecimen Research
State Laws on Specimens Collection/Storage
HIPAA FAQs on Biorepositories
Research Repositories, Databases and the HIPAA Privacy Rule (NIH)
Genetic Information Nondiscrimination Act of 2008 (GINA)
Leading Biorepositories
BioLINCC (National Heart Lung and Blood Institute)
Directory of North American Biospecimen Banks
dbGaP NIH GWAS Data Repository
HIV / AIDS Specimen Repository NIAID
Kaiser/ UCSF Research Program on Genes, Environment, and Health
Mayo Clinic
Harvard Biorepositories
University of Michigan Biorepository
NuGene Project (Northwestern)
BioVu (Vanderbilt)
Vanderbilt Biorepository Consortium
Veteran’s Affairs GenISIS
Duke Institute for Genomic Sciences and Policy
National Biorepositories
Biobank Directory by Country
Britain
Estonia
Finland
Iceland
Luxembourg
Norway
Singapore
Sweden