Dive Brief:
- The Obama Administration has announced its privacy principles for the Precision Medicine Initiative (PMI), which will collect health data from a million or more volunteers.
- Experts drafted the principles after researching privacy policies for large biobanks and research cohorts as well as weighing more than 100 public comments from draft suggestions.
- There are six categories established for the privacy principles: governance; transparency; respect for participant preferences; participant empowerment via access to information; appropriate data sharing, access, and use; and data quality and integrity.
Dive Insight:
A security framework for the initiative will be developed over the next several months and include administrative, technical, and physical safeguards for the project data.
The National Institutes of Health (NIH) will be recruiting the one-million-plus volunteers to share their health data in order to help researchers better understand disease and develop ways to customize treatments. The Office of the National Coordinator for Health IT will implement interoperability and privacy standards for the data.
The PMI was launched by President Obama in January 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 press release.