Data. It is the essential output of biomedical research that allows us to move science forward and improve human health. It gets a little trickier however when the conversation turns to how to best provide researchers with access to that data. Especially when you’re trying to balance appropriate protections for human participants in research, who deserve both the maximal use of their data for achieving medical progress and the respectful use of their data in a way that affords privacy protections and consistency with consent. At the NIH, lots of smart people spend a lot of time thinking about human data and how best to manage it. However, we can’t do it alone. We also need help from our stakeholders to solve these difficult issues.
Back in 2007, the National Center for Biotechnology Information (NCBI) developed the database of Phenotypes and Genotypes (dbGaP) to archive and distribute the results of human genome-phenotype studies that fall under NIH’s policies for sharing genomic data.
The dbGaP is a controlled-access data repository and currently serves as a central portal to submit, locate and request access to genomic and associated phenotypic data. It is a highly utilized, valuable, and rapidly growing resource with over 750 studies available for access. Users of dbGaP have access to a wide range of data types such as microarray, genome-wide association study, whole and targeted genomic, transcriptomic, epigenomic, and metagenomic data. As of January 2017, NIH has approved approximately 28,000 Data Access Requests for over 4,500 investigators from 46 countries.
Over the years, users of the dbGaP system have shared their feedback, and many have expressed a number of frustrations relating to the difficulty in navigating the submission process. To address these concerns, NIH has made a number of improvements to dbGaP (see Box 1). To best serve the needs of the research community and enable robust and responsible data sharing, it is imperative that new resources, tools, and data management models be developed to make the system as user-friendly and efficient as possible, as well as increase its utility.
With this in mind, NIH released today a Request for Information (RFI) seeking public comments on the data submission and access processes for dbGaP, and on the management of data within dbGaP, in order to consider options to improve and streamline these processes.
It is vital that we hear from members of the research community on this topic. We want to take your thoughts and ideas into account when attempting to increase the utility of dbGaP. I invite all stakeholders who currently use or may use dbGaP to provide us with their thoughts. Comments will be accepted until April 7, 2017.
Box 1: Recent Improvements/Upgrades to dbGAP