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NHGRI s Collins Says US Must Launch Its Own Biobanking Project

SALT LAKE CITY, Oct. 27 (GenomeWeb News) - In light of biobanking projects underway in the UK, Iceland, Estonia, and Japan, the US can ill afford to not invest in its own population-based cohort study, Francis Collins said yesterday.


Speaking at the American Society of Human Genetics conference held here this week, the director of the National Human Genome Research Institute said that the falling cost of genotyping, coupled with the completion of the International HapMap Project, has enabled the US to start generating its own repository of genetic information.


He admitted that it would be an "uphill battle" and that the "cost is likely to be in the hundreds of millions of dollars a year" but said the project would pay off in the form of future research. "It might, in fact, in the long-term be a good investment," he said.


Collins said that current "case-control" studies such as the Framingham Heart Study that look at smaller groups of people are valuable, but that if the US really wants to understand the effect that environmental factors play on genetic diseases, researchers will need a "cohort that's selected to cover all ages, all races" and all states of wellness.


Ideally, Collins said that the project would have a large sample size, perhaps from two to three million individuals, with the "full representation of minority groups and a broad range of ages, and a broad range of genetic backgrounds." He said that significant data about participants' lifestyles would be included, and that that information should be made available to all researchers. "This kind of project would only have value if the maximum number of people would have access to it and can draw inferences from it," he said.


Collins acknowledged the ethical issues and potential privacy concerns of such a project, but said he could imagine that most Americans would want to be involved in the study because it would be an historic undertaking.


He added that similar projects in progress around the globe have left the US behind in biobanking endeavors and warned that if "we wait until we get data to start setting [the project up] then we have waited too long."

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