On Monday the Obama Administration released Privacy and Trust Principles for the Precision Medicine Initiative. This follows a public comment period responding to the draft principles released this summer.
My comparison of the draft and final principles suggest that most of the changes are in terms of streamlining and reorganizing the document. The concerns I had at the time I posted about the draft principles remain. An enforcement regime for these principles is not within the document, and I think it is critical to success in obtaining the data from the million individuals the Initiative wants. The same is true of the Security Policy Framework (what was probably the Security Framework in the draft principles).
The broad Privacy and Trust Principles described by the document are:
- Creating a dynamic and inclusive governance structure
- Building trust and accountability through transparency
- Respecting participant preferences
- Empower Participants through Access to Information
- Responsible data sharing, access and use
- Maintaining data quality and integrity