As part of its Precision Medicine Initiative (PMI) announced in January 2015, the White House’s interagency agency working group has developed privacy and trust principles for activities within the agenda.
The initiative’s aim, per President Barack Obama’s announcement earlier this year, is to pioneer a new model of patient-powered research to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.
According to a White House statement, the recrntly-developed 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,” it says.
The privacy and trust principles were developed by an interagency working group that was co-led by the White House Office of Science and Technology Policy, the Department of Health and Human Services’ Office for Civil Rights, and the National Institutes of Health. The principles were developed after and were informed by series of expert roundtables, review of the bioethics literature, an analysis of privacy policies and frameworks used by existing biobanks and large research cohorts, and comment from the public, according to the White House.
What’s more, PMI is taking steps to build security practices into the development of the initiative to ensure the confidentiality and integrity of all PMI data. The security policy framework will draw on best practices in identifying strong administrative, technical, and physical safeguards to ensure the confidentiality and integrity of all PMI cohort specimens and data, and will be reevaluated regularly to keep pace with an ever-advancing technological environment , the White House says.
The privacy and trust principles can be read in their entirety here.