On Friday the White House formally launched the Precision Medicine Initiative. I mused about it shortly after it was mentioned in the President’s State of the Union address. While that post covered the why, the announcement on Friday also covered the how this Initiative might move forward.
While the National Institutes of Health (NIH) would receive the bulk of the $215 million (with much of its share going to the National Cancer Institute), the Food and Drug Administration (FDA) and the Office of the National Coordinator for Health Information Technology (ONC) would also contribute to the Precision Medicine Initiative. The NIH and National Cancer Institute projects are focused on clinical research on individualized treatments and the FDA and ONC are focused on updating technical and regulatory infrastructure to better handle the kinds of data sets and data sharing expected to come from a project that burrows down to individual treatments.
A lot of this data will come from a voluntary research cohort, a group who agree to contribute their medical data (including genetics, lifestyle, metabolites, personal sensors and environmental information) to the effort and would help design the initiative. This cohort would be one million strong. Thankfully the Administration recognizes the privacy impact of making detailed medical information about that many people available for research access. How effective they will be in assuring the privacy of this information remains to be seen.
While I recognize the impact of cancer, and how genetic markers for cancer can help in treatment, I’m a bit skeptical of how broadly focused a Precision Medicine Initiative can be when roughly one third of its budget targets cancer. Yes, cancer takes many forms, and targeting individual treatments could benefit a lot of people suffering from rare forms of the disease – forms that don’t respond well to currently available treatments. I’d rather this not become the Precision Cancer Initiative, at least not when it was first called something else.