Sharing is Caring: Are you ready for the NIH’s Data Management & Sharing Policy? Part 1
NIH
The Feds Want (to hear from) YOU!
When we think of practicing citizenship, we often think about exercising the right to vote and calling our representatives. But did you know the federal government regularly seeks public comments about specific topics and rules that are under consideration?
Both NIH and FDA currently are currently seeking comments on topics of interest to the human subjects research community. Share your thoughts on informed consent language that fosters participant data and specimen sharing, leveraging existing data to advance pediatric drug development, and more.
Continue readingRe-post: Minding the (db)GaP: Age of Majority and the NIH’s GDS Policy
The National Institutes of Health Genomic Data Sharing (GDS) Policy recognizes participants’ informed consent as integral to responsible sharing of genomic data, stating that consent processes must “explicitly discuss future research use and broad data sharing, even if the data are generated from specimens that are de-identified” before such information may be deposited in publicly available databases. Minors are unable to legally consent, however, and parental permission is valid only until the child turns 18. Do researchers have an ethical obligation to re-contact of-age participants to obtain consent, perhaps years after their genetic data was collected?
