G/GA4GH/Accountability-Policy/Form/0.md

/Docs/G/GA4GH/Accountability-Policy/Form/0.md
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The significant public health imperatives for the translation of new genomics knowledge, coupled with rapid technological developments, scientific advancements in genomics, and the increasingly global scale of data sharing, reinforce the need for a framework to ensure accountability, and in turn trust, between stakeholders. Individuals asked to share their data for broad research purposes, together with the ethics bodies responsible for protecting their interests, are asked to trust in a diverse, distributed cast of stakeholders around the world. Data sharing standards continue to emerge from a variety of sources, including consent processes, laws, regulations, and policies established by funding agencies, journals, institutions, large research projects and research consortia. Data stewards impose additional conditions on data use through access agreements. Even in contexts where data sharing standards are clearly established, however, policies and processes for monitoring and responding to non-compliance may be lacking. The community largely relies on employers or guarantors of data users to hold them accountable, but these institutions may lack the necessary resources, incentives, or expertise to do so effectively. Transparency in this and other contexts is crucial for accountability. If data stewards are not open about data availability and access processes, it is difficult to assess if data is fairly and effectively available. If data users do not take steps to demonstrate that use limitations are respected, it is difficult to assess if they are accountable for the data entrusted to them. To ensure accountability between stakeholders and respect for the Framework, there is a need for clear data sharing standards, openness about data handling practices, as well as policies and processes for monitoring and responding to non-compliance with local standards.