How can academic institutions standardize precision medicine research processes?
The goal of the Precision Medicine function of the Washington University Institute of Clinical and Translational Sciences is to streamline precision medicine research processes across the university. Three separate initiatives supported this effort: (1) outreach to community and faculty members through surveys and focus groups to assess interest and concerns regarding participation in precision medicine research, (2) convening of key stakeholders to develop a standard genomic consent and institutional database to support combined efforts to store and integrate electronic health record and genomic data and (3) support and develop resources to facilitate local access to large shared datasets, including UK Biobank. First, our faculty survey revealed that the vast majority agreed that a shared, institutional-level database that holds genomic/genetic data and electronic health record data is needed and that they would contribute their data to this resource. Community focus group members, while eager to participate and benefit from precision medicine and genetic testing, identified concerns about both consent and data privacy. Second, to encourage a standardized model for genomic consent that would alleviate the need for individual investigators to maintain and modify protocols to comply with best practices, we developed a standardized genomic consent. This standardized consent is now being used in pilot studies at Washington University in St Louis. Third, a standardized model for genomic consent is advantageous because it facilitates data sharing across the institution and will be an essential component of a common institutional database that stores both electronic health records and genomic/genetic data. We are currently developing such a dataset to house clinical, genetic, and radiographic data from the UK Biobank that will facilitate research by investigators from Washington University in St Louis. Future goals include expanding community engagement to understand the extent of data privacy concerns and improving public dissemination of the benefits of participating in precision medicine research. The Precision Medicine function will partner with key institutional stakeholders to identify and improve the processes needed to support both the development and use of an institutional database that couples electronic health records and genomic/genetic data.