Precision Medicine Initiative Seeks Input On Privacy and Trust Principles

I completely missed this one when it was announced in early July, but the interagency working group on the Precision Medicine Initiative (PMI) is working on privacy and trust principles to guide the project.  It is seeking public comment on a proposed set of principles, but the deadline is Friday, August 7.

The principles are intended to guide the PMI in the large-scale data collection and analysis that is critical to the project.  The PMI is trying to gather data voluntarily from a large cohort (at least one million individuals) and allow responsible access to that information by a large number of researchers and institutions (and the members of the cohort itself).  Solid privacy and trust principles, with an implementation and enforcement regime behind it, can engender sufficient confidence in the public for the project to reach its million-member cohort.

In parallel with this process, the principles indicate there will be work on a data security program for the PMI.  I have not yet found any working documents on that program, but I will link to them from this blog once I do.

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One thought on “Precision Medicine Initiative Seeks Input On Privacy and Trust Principles

  1. Pingback: Precision Medicine Initiative Working On Its Privacy | Pasco Phronesis

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