Mgh Data Use Agreement
The most difficult problem is reaching cooperation between data providers to describe their access and licensing procedures. This does not mean that all data providers must make metadata on their inventory available in DATS. The bioCADDIE project demonstrated DATS`s flexibility by mapping and integrating metadata from more than 70 data repositories into DataMed (Chen et al., 2018). However, the possibilities of data repositories are very different. The main data repositories (z.B dbGAP, Protein Data Bank, ICPSR) have defined metadata standards as well as hardware and human resources to adapt to the new requirements. Other data archives operate with minimal staff and precarious financial resources, even though they serve important scientific communities. We see a great need for NIH and other funding agencies to adopt standards for data repositories such as CoreTrustSeal (CoreTrustSeal, 2018) and to develop new funding mechanisms to provide sustainable support for data collection, dissemination and retention. As funding agencies increasingly focus on the principles of fair play (Findability, Accessibility, Interoperability, Reducibility) (Wilkinson, et al., 2016), the conditions for access and use of data should also be found. require recipients to ensure that all representatives (including potential subcontractors) to whom they disclose the information accept the same restrictions as those provided by the agreement; and Felix Ritchie (2005) proposed a confidential data protection framework known as the „Five Safes.“ Data repositories can protect confidential data by allowing only access in a physical or virtual „secure setting.“ Researchers wishing to use highly sensitive data may be required to visit a safe „enclave“ such as. B the Research Data Centers of the Census Bureau (U.S. Census Bureau, 2018) and the Veterans Health Administration VINCI System (U.S. Department of Veterans Veterans Affairs, 2018), or the program code to be executed by the Data Repository („Remote Service“) (Abowd – Lane, 2004). A growing number of data providers allow researchers remote access to computers in a secure data center, and this is the model chosen by the National Institutes of Health (National Institutes of Health, 2017, p.
55). Researchers working in these „virtual data slaves“ see a standard operating system, as they would on their local computer, but they cannot download data to their local computer (Data Sharing for Demographic Research, 2018; Research Data Assistance Center, 2016).