# Governance and Policy

Responsible data sharing requires transparent governance approaches to ensure data contributors, data curators, and data consumers are empowered to share and use data effectively. To this end, members of the DCC work closely with members of the HTAN consortium to develop and implement data sharing agreements and operational policies following the principles of the NCI Cancer Moonshot Public Access and Data Sharing Policy. A Data and Materials Sharing Agreement (DMSA) establishes the responsibilities and boundaries associated with data sharing with the DCC and within the HTAN consortium, while an External Data Sharing Policy ensures a commitment to share all generated data publicly. An Associate Membership Policy provides a mechanism for experts from outside of HTAN to contribute their expertise and knowledge. In addition, specific policies related to publications and the sharing of research protocols and computational tools were developed. A key infrastructure component for the implementation of these data-sharing policies is the Synapse platform, which provides fine-grained access controls at individual and team levels to ensure that data contributors and DCC staff have appropriate access to their data. Synapse teams were used to enable project-level access and tracked against a table of HTAN membership.

Ensuring the privacy of HTAN research participants is critical and a joint responsibility of the HTAN Centers generating data and the DCC. HTAN Centers are required to fully de-identify data before submission to the DCC via the Synapse platform, and must describe their data and metadata de-identification process in a de-identification plan. Following data submission, the DCC is responsible for implementing additional checks, to ensure patient privacy. Verifying that HTAN imaging data is de-identified is a particular focus of the DCC. For example, the extensive metadata collected alongside HTAN data was noted to theoretically enable the reconstruction of HIPAA-protected dates (such as participant date of birth) from the date of imaging data acquisition through longitudinal metadata attributes. The HTAN DCC therefore developed policies and procedures to confirm that all date attributes, including those in TIFF tags, OME-XML, and other locations, were detected and reported back to data contributors for removal before data release.

# Governance and Policy

# Policy Documents