NIH director focusing on solving precision medicine challenge

Director of the National Institutes of Health, Dr. Francis Collins, is committing dedicated time to the most challenging part of President Barack Obama’s $215 million “precision medicine” program.

Collins said that the most complex part of the program is creating a way to piece together data from a labyrinth of existing studies. NIH must figure out how to take medical records from various health systems and make them function together, according to Reuters.

There are already providers such as Kaiser Permanente, the Mayo Clinic and the U.S. Department of Veterans Affairs that are commencing such studies and have expressed interest in participating. Their job will be to collect loads of health information and genetic data on more than 1 million Americans to develop targeted medicines.

Unfortunately, this does not mean that all of the data is in one place being managed by the same software.

Collins first took on a large study of U.S. citizens in 2004 as director of the National Human Genome Research Institute when he successfully led an international team to sequence the first human genome.

Even though his 2004 proposal failed, the significant drop in the cost of genomic sequencing and the adoption of electronic medical records are now making it possible.

Collins has said that the goal of the venture is to advance the understanding of the drivers of human disease and create medicines dedicated to an individual’s genetic makeup. He aims to put patients in charge of determining how their data will be used.

“You want individual participants to have control over their data and have a dynamic opportunity to change the level at which they are willing to give access to possible research partners,” he said.

Collins has elected NIH Deputy Director Kathy Hudson and Yale geneticist Dr. Richard Lifton to lead a panel to carry out the initiative.

The panel will devote the next several months studying numerous proposals. Collins hopes that by September or October, there will be a clear path on how to start it off.

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