Over the past decade National Institutes of Health (NIH) has shaped its data-sharing policies to achieve two goals--maximize the value of research, and protect patient privacy and intellectual property. Now, NIH is seeking feedback on its plans to apply these aims to the sharing of genomics data.
The call for comments follows the publication of a draft Genomic Data Sharing (GDS) policy. In the document--which applies to all research funded by NIH--the organization details the need to strip all data of names, social security numbers and other identifiers before uploading. De-identified data must then be coded using a random, unique code to protect participant privacy. Genomics data gathered from non-human research are covered by the document too, but is free from these privacy concerns.
All data is subject to NIH's desire for widespread sharing. "Not only does data sharing allow data generated from one research study to be used to explore a wide range of additional research questions, it also enables data from multiple projects to be combined, amplifying the scientific value of data many times," NIH wrote in its draft GDS policy. NIH wants non-human data shared no later than the date of publication, and in some cases is pushing for an earlier release.
Researchers can upload results to any widely-used database, regardless of whether NIH funds the repository. NIH highlights 10 potential data repositories, including Array Express, Mouse Genome Informatics and WormBase. The particulars of the platform are less important to NIH than guarantees data is available in secure, confidential repositories. NIH is accepting comments until November 20, and plans to hold at least one public webinar to discuss the draft.