ABSTRACT

Precision Medicine Initiative: Privacy and Trust Principles   [open pdf - 119KB]

"President Obama launched the Precision Medicine Initiative (PMI) in January 2015 to accelerate 'biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.' Precision medicine is enabling a new era of clinical care through research, technology, and policies that empower patients, researchers, and providers to work together toward development of individualized care. Advancing the science of medicine also calls for a change in the culture of medical practice and medical research to engage individuals as active collaborators - not just as patients or research subjects. As part of its commitment to ensure that privacy is built into the foundation of the Precision Medicine Initiative, the White House convened an interagency working group in March 2015 with the goal of developing the following Privacy and Trust Principles. The principles provide broad guidance for future PMI activities regarding: governance; transparency; participant empowerment; respect for participant preferences; data sharing, access, and use; and data quality and integrity. The principles articulate a set of core values and responsible strategies for sustaining public trust and maximizing the benefits of precision medicine."

Publisher:United States. White House Office
Date:2015-11-09
Copyright:Public Domain
Retrieved From:White House: http://www.whitehouse.gov/
Format:pdf
Media Type:application/pdf
URL:https://www.hsdl.org/?view&did=797733
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