Resources for Federal and International Guidelines, Regulations and Policy Issues

Non-profits and universities

Australasian Biospecimen Network (ABN)
The purpose of the Australasian Biospecimen Network (ABN) is to provide a forum to address technical, legal / ethical, and managerial issues relevant to human biospecimen repositories within Australia and New Zealand.

Collaborating with Commercial Tissue Repositories: An Ethics Guide for IRBs, Researchers, and Policymakers
This guide serves as a summary and analysis of the ethical issues involved in medical center collaborations with commercial tissue repositories.

Genetic Alliance BioBank
The Genetic Alliance BioBank is an advocacy owned repository for biological samples and clinical data. It provides centralized, standardized collection and archiving; highest biorepository and participant protection standards; open access for all organization approved researchers; advocacy organization control.

HumGen International
The HumGen website deals with the social, ethical and legal aspects of human genetics. Many different issues are explored, such as confidentiality of genetic data, consent to genetic testing, and stem cell research.

International Society for Biological and Environmental Repositories
ISBER, the International Society for Biological and Environmental Repositories, is a division of the American Society for Investigative Pathology. Based out of Rockville, Maryland, and founded in 2000, ISBER’s main goal is to provide information and guidance on the safe and effective management of biological and environmental specimen collections (read more).

onCore UK
An operational goal for onCore UK is to achieve a confederation with other biobanks. This will benefit all involved by allowing the sharing of expertise and information, the establishment of harmonized standards for the operation of cancer biobanks and provide a means access to a larger pool of biosamples from the confederated banks.

Government

Human Genome Project
This site contains information on the Human Genome Project, which ended in 2003.

National Cancer Institute Office of Biorepositories and Biospecimen Research
The OBBR serves as the coordinating and management center for overarching biospecimen-related policies, practices and other related issues across the NCI’s biorepositories.