The PGC Data Access Portal And Genomic Privacy: Data Sharing Procedures To Satisfy All Communities

Abstract

BackgroundThe Psychiatric Genomics Consortium (PGC) is an exceptional model of international collaborative research, with a long track record of success. Data sharing is the cornerstone of the PGC and is critical for the discovery of genes and pathways influencing the many psychiatric and neurodevelopmental traits under investigation in the PGC. However, community concerns about genomic privacy must also be balanced with data sharing in the interest of discovery. A key element of the success of the PGC has been the promise of responsible conduct in the context of data sharing. In collaboration with PGC workgroups, individual data owners, and institutional data repositories, the PGC Data Access Committee (DAC) developed data sharing protocols and a web-based portal to manage the increasing burden of data sharing requests among a growing number of investigators. This educational session will provide a practical demonstration using these tools within the framework of ethical, legal, and social issues (ELSI) pertinent to data sharing. MethodsThis session will inform attendees of community attitudes regarding genomic privacy and data sharing in the context of a hands-on demonstration of data access tools. Early studies from the from the Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe), a Center for Excellence in ELSI Research (CEER) at Vanderbilt University, indicate that there is widespread confusion about the meaning of “genomic privacy” and substantial community concerns about ethical behavior on the part of researchers. An awareness and appreciation of these issues is paramount for any investigator in understanding the function and work of the PGC-DAC. These studies provide rationale and motivation for the responsible use safeguards in place and further underscore the need for transparent, efficient, and responsible data sharing policies that can be easily operationalized. Our web-based portal significantly reduces the administrative burden involved in meeting ethical requirements while the organization of data helps to ensure regulatory compliance. ResultsFirst, I will share early findings on community attitudes towards genomic privacy and data sharing from the GetPreCiSe center at Vanderbilt University. This will provide a framework for understanding the role of the DAC and the data access procedures. Then, I will walk through the permission requirements and certifications needed prior to submitting a data access request. PGC data is organized into “packages” on the LISA server which correspond to sharing permissions established through agreements with research participants. Users with appropriately documented permission can access data within two weeks of submitting a request. I will highlight some common pitfalls that can delay this process. Finally, I will demonstrate use of the data access portal and provide a behind-the-scenes look at what happens to a data access request after it is submitted. ConclusionsA transparent and efficient data access procedure, like that developed by the PGC-DAC, increases the value of data and increases trust between participants and researchers. The aim of this session is to familiarize attendees with the tools available to them to responsibly share and access data through the PGC.