Resources for Federal and International Guidelines, Regulations and Policy Issues.
Non-profits and universities
The UK Biobank Ethics and Governance Council (EGC) is an independent committee established by the Wellcome Trust and the Medical Research Council. Its purposes are:
- To act as an independent guardian of the UK Biobank Ethics and Governance Framework (EGF) and advise on its revision;
- To monitor and report publicly on the conformity of the UK Biobank project with the EGF;
- To advise more generally on the interests of research participants and the general public in relation to UK Biobank.
BiobankCentral is dedicated to advancing the application of human biological materials and clinical data to life sciences research to accelerate the development of medical solutions.
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.
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.
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.
The Public Population Project in Genomics (P3G) is a non-for-profit international consortium to promote collaboration between researchers in the field of population genomics.
A pan-European and broadly accessible network of existing and de novo biobanks and biomolecular resources. The infrastructure will include samples from patients and healthy persons (with links to epidemiological and health care information), molecular genomic resources and biocomputational tools to optimally exploit this resource for global biomedical research.
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.