The National Institutes of Health has issued the final NIH Genomic Data Sharing (GDS) Policy requiring the development of data sharing plans for all NIH-funded, large-scale human or non-human projects that generate genomic data, regardless of funding level. This policy will be effective for all research funding applications submitted for the January 25, 2015 receipt date and thereafter.
The policy itself can be accessed here.
1. Researchers must obtain the informed consent of study participants for their genomic and phenotypic data to be used for future use and to be shared for broad biomedical purposes without specific data use limitations, unless those data use limitations were specified in the data sharing plan submitted as part of the funding request and approved by the NIH.
2. For genomic research using cell lines or clinical specimens, if those specimens were created or collected after the effective date of the policy, informed consent for future use and broad sharing is required, even if the cell lines or specimens are de-identified.
3. Investigators conducting research involving preliminary studies supported by non-federal funds are strongly encouraged to follow the NIH guidelines, to ensure that data collected in preliminary studies can be employed in future NIH-funded projects.
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