The precision medicine initiative proposed by President Barack Obama last week would center on a huge new biobank containing medical records and genetic information for perhaps a million Americans. It would not be created from scratch by enrolling new volunteers, however, but would instead pull together existing studies into one giant database. <\/p>\n
Thats according to several scientists familiar with the broad outlines of the project who spoke on background with ScienceInsider. The biobank would be used for studies ranging from finding new disease-gene associations to working out how to use genomic and other molecular information in routine medical care. On Friday, the White House is expected to reveal details of the initiative, which will reportedly cost hundreds of millions of dollars. <\/p>\n
Such a national biobank would put the United States in line with other countries, such as the United Kingdom, Iceland, and Japan, which have built large population databases for research and medical care. A similar U.S. biobank has long been on the wish list of National Institutes of Health (NIH) Director Francis Collins, who led the effort to sequence the human genome as director of the National Human Genome Research Institute (NHGRI). <\/p>\n
The term precision medicine, however, is relatively new. It comes from a 2011 report from the National Academies National Research Council (NRC) that called for combining medical records and genetic and other molecular data for large groups of people into a single knowledge network that would be used for understanding diseases and tailoring treatments. <\/p>\n
Keith Yamamoto, a member of the NRC panel and vice chancellor for research at the University of California, San Francisco, insists that precision medicine is not just a new buzzword for personalized medicine. Instead, it is a much broader endeavor, because it would integrate a huge range of biological data, for example on model organisms. Both basic researchers and clinicians could draw on the network, he says. Its a giant integration mill from which stuff would fall out from the bottom as new knowledge, says Yamamoto, who has conferred witht the White House Office of Science and Technology Policy on the topic. <\/p>\n
As a pilot project, NRC suggested building a large research database with medical and genetic data on 1 million adults. That appears to be reflected in the precision medicine initiative. The plan is to link up existing NIH-sponsored cohort studies and large biobanks created by health care providers. They may range from the famed 67-year-old Framingham Heart Study in Massachusetts funded by the National Heart, Lung, and Blood Institute (NHLBI) to research databases being built by the Marshfield Clinic in Wisconsin and Kaiser Permanente in San Francisco that are linking genetic data with health records. <\/p>\n
Some have questioned whether it is feasible to combine medical records from different sources for researchdata are often missing or collected in different ways. Theres a lot of fuzziness, says cardiac disease researcher Dan Roden, who leads Vanderbilt Universitys BioVU biobank in Nashville. But an NIH-funded project called eMERGE that combines medical records from Vanderbilt and eight other medical centers has shown that it can be done, Roden says. <\/p>\n
One matter to be worked out for a megabiobank is which cohorts to include, says human geneticist David Goldstein of Columbia University, a member of the 2011 NRC panel. For example, you absolutely must have recontactability, or permission from patients to be called and asked to come into a clinic for further exams and tests. Some biobanks, such as Vanderbilts, do not have that consent from participants, Roden notes. <\/p>\n
Assembling a cohort that represents the diversity of the U.S. population will also be important. For that reason, one of the largest planned U.S. biobanksthe Department of Veterans Affairs Million Veteran Programwould not be enough, because its mostly men. <\/p>\n
Another question is whether to sequence the whole genomes of participants, or just the 1% that codes for proteins, which would be cheaper. Researchers will also need to work out ways to share genomic data securely, perhaps drawing on existing efforts to develop standards. <\/p>\n
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