/Docs/G/GA4GH/Accountability-Policy/Form/0.md
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Preamble
  • The Global Alliance for Genomics and Health (‘GA4GH’) is an international, non-profit coalition of individuals and organizations working in healthcare, research, disease advocacy, life science, and information technology dedicated to improving human health by maximizing the potential of genomic medicine through effective and responsible data sharing. Its mission is to accelerate progress in human health by helping to establish a common framework of harmonized approaches to enable effective and responsible sharing of genomic and clinical data.
  • Openness and accountability between stakeholders are needed to foster trust and collaboration.
  • This Accountability Policy is directed at stakeholders responsible for oversight of data sharing, and outlines best practices for monitoring and responding to non-compliance with data sharing standards (see definition, s. 2.3).1 The Policy builds on the GA4GH Framework for Responsible Sharing of Genomic and Health-Related Data (the ‘Framework’), which sets forth a harmonized, human rights approach for responsible data sharing, based on four Foundational Principles:
    • Respect Individuals, Families and Communities
    • Advance Research and Scientific Knowledge
    • Promote Health, Wellbeing and the Fair Distribution of Benefits
    • Foster Trust, Integrity and Reciprocity
  • The Framework identifies ‘Accountability’ as a core element for responsible data sharing, and encourages stakeholders to:
    • Put in place systems for data sharing that respect the Framework,
    • Track the chain of data access and/or exchange to its source,
    • Develop processes to identify and manage conflicts of interest, and
    • Implement mechanisms for handling complaints related to data misuse; for identifying, reporting and managing breaches; and for instituting appropriate sanctions.
  • Other data sharing best practices can be found in the specific policies of the GA4GH, including the Consent Policy and Privacy and Security Policy. Links to additional sources of procedural guidance relating to accountability can be found in Appendix 3.