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 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

European Federation of Pharmaceutical Industries and Associations (EFPIA) & Pharmaceutical Research and Manufacturers of America (PhRMA) Principles for Responsible Clinical Trial Data Sharing

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 


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