The Precision Medicine Initiative is still in its infancy, and so are the privacy rules that will govern it. While the initiative’s form and functions are a work in progress, the HHS Office for Civil Rights has crafted some overarching principles to govern how it will oversee the privacy challenges posed by PMI, said Deven McGraw, OCR’s deputy director for health information privacy.
OCR has developed 29 principles “grounded in 10 fundamental assumptions of how PMI will operate,” said McGraw, speaking Wednesday at the 2015 Policy Conference sponsored by HL7 in Washington, D.C. “A robust data security framework will be built in from the start. This is a new model for scientific research, but it is not widespread.” OCR is developing its first set of “frequently asked questions” regarding privacy and the PMI, and expects to release it soon, she added.
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