Yesterday, Reuter's published the numbers
Total budget: $215 million in his 2016 budget for the initiative.
$130 million would go to the NIH to fund the research cohort
$70 million to NIH's National Cancer Institute
$10 million would go to the Food and Drug Administration to develop databases
$5 million would go to the Office of the National Coordinator for Health Information Technology to develop privacy standards and ensure the secure exchange of data.
I couldn't understand, from reading the Reuter's article, whether this budget covers expenses to be incurred in 2016, or whether the budget is spread over multiple years. My guess is that it's the former, and that the initiative will draw additional funds for each year that it's active. It appears that the initiative will not be confined to genomics. Other high-throughput 'omics data will also be captured (e.g., epigenomics, metabolomics).
If we've learned anything in the post-genomics era, it's that biological systems are incredibly complex. Assembling terabytes of 'omics data will probably teach us this same, frustrating, lesson AGAIN; but it's not obvious how this effort will help us to substantially prevent, diagnose and treat the common diseases.
Believe it or not, most of the clinical advances in molecular medicine have come from studying rare diseases and rare variants of common disease. Unlike the common diseases, the rare diseases are often simple (one gene -> one protein -> one pathway -> one disease). It has been a surprise to some, but drugs developed for rare diseases often have applicability to common conditions. This happens because common diseases employ disease pathways that are also found in rare diseases. In my opinion, the best way to conquer the [complex] common diseases is to start by understanding the pathways operative in the [simple] rare diseases. So, if we want to invest $250 million in 'omics research, please let's focus on disease pathways discovered in rare diseases and shared by the common diseases.
- Ⓒ 2015 Jules J. Berman
tags: rare disease, orphan disease, personalized medicine, individualized medicine, genetic testing, gene testing, molecular diagnostics, biomarkers, pharmacogenetics, pharmacogenomics, future of medicine, state of the union address, funding initiative, NIH, FDA, big pharma, lobbyists, lobbying, scientific politics, scientific ethics, disease genetics, common diseases, complex diseases, rare variants, gene variants, whole genome sequencing