White House shares privacy principles for Precision Medicine Initiative
The White House has released a set of privacy principles that will govern the Precision Medicine Initiative.
As part of its commitment to ensure that privacy is built into the foundation of the initiative, the administration worked with experts from inside and outside government, who crafted the principles after analyzing bioethics literature and privacy policies for large biobanks and research cohorts as well as taking into account more than 100 comments on their draft suggestions, according to an announcement.
The comments emphasized the importance of engaging participants as collaborators and the need for a robust data security framework.
The principles are organized into the following six categories:
- Governance
- Transparency
- Respect patient participants
- Participant empowerment through access to information
- Appropriate data sharing, access and use
- Data sharing, access and use
The White House will begin work with an interagency group to develop a security framework for the initiative that includes strong administrative, technical and physical safeguards for project data.
The initiative is based on the recruitment of at least one million volunteers to share their health data so researchers can increase their understanding of health and disease. It also will rely on the Office of the National Coordinator for Health IT to implement interoperability and privacy standards for the health data.
Editor
Editor Beth earned a bachelor’s degree in journalism and master’s in health communication. She has worked in hospital, academic and publishing settings over the past 20 years. Beth joined TriMed in 2005, as editor of CMIO and Clinical Innovation + Technology. When not covering all things related to health IT, she spends time with her husband and three children.