The page provides links to examples of guidelines and policies for sharing clinical, genetic and public health research data from research funders, regulatory agencies and journals.
Please send recommendations for resources to add to this collection to bioethicsresearchreview@tghn.org or via our discussion group or blogs. Data sharing policies and governance processes for specific data respositories and studies are available here. Reports on aspects of best practices in sharing individual-level data from health research are available here. National and international regulations on privacy and data protection are included in the US Office of Human Research Protections (OHRP) compilation of Human Research Standards.
Research funders
Public Health Research Data Forum summary of funder data sharing policies
Canada - Genome Canada Data Release and Resource Sharing
US - National Institutes of Health Data Sharing Policy
US - National Insitutes of Health Genomic Data Sharing Policy
US - Bill and Melinda Gates Foundation Open Access Policy
UK - Biotechnology and Biological Sciences Research Council (BBSRC) Data Sharing Policy
UK - Medical Research Council (MRC) Data Sharing Policy
UK - Wellcome Trust Sanger Institute Data Sharing Policy - and Guidelines
UK - Cancer Research UK data sharing and preservation strategy
UK - Wellcome Trust Position Statement on Data Management and Sharing
Regulatory Agencies
European Medicines Agency - Policy on Publication of Clinical Data