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5M.4.PRODUCT: Draft Policy: Restricted Data Access, Derived Data Management



Provide a Draft Policy for Restricted Data Access and Derived Data Management within the DCPPC. Contains guidelines for the use and sharing of existing controlled access patient data like that from TOPMed, NHLBI and GTEx. It also provides guidelines for other data stewards on how to contribute new genomic datasets to the Consortium.

What they achieved

The deliverable provided The Draft Policy for Restricted Data Access and Derived Data Management. It is a preliminary document and FAQ that describes acceptable use of patient data for a researcher with a given access and permission level. It focuses on DCPPC members who have Tier I access; that is, members who can access restricted patient data, but who are only authorized to use it for a narrow range of activities. Some revisions are suggested before the “draft” label can be removed.

Why is this valuable?

A major objective of the Data Commons is to provide a cloud-based platform where investigators can store, share, access, and compute on biomedical research data, including controlled-access data. Members of the DCPPC all have varying levels of data access, and varying permissions of what can be done with the data each member has access to. This document provides a set of guidelines for how to use the Data Commons. It is as important as the Code of Conduct.