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NIH, Seeking to Harmonize Genome-Association Studies, Wants to Centralize Certain Genotype, Phenotype Data

NEW YORK (GenomeWeb News) – The US National Institutes of Health is considering harmonizing NIH-funded genome-wide association studies by corralling all genotypic and phenotypic data from these studies into a central government repository, the NIH said today.
 
Several NIH institutes have either recently launched or plan to start these studies with the “expectation” that the studies will accelerate drug and diagnostic development, especially for “individualized preventive medicine,” according to Director Elias Zerhouni.
 
“As numerous [genome-wide association studies] … get underway, NIH seeks to harmonize the policies by which the results will be made available to researchers,” the NIH said in a statement.
 
The proposed policy would ask NIH-funded investigators performing genome-wide association studies to “quickly submit” subjects' genotypes and “relevant phenotypes” to a centralized NIH data repository.
 
In the statement, the NIH said that these data “will be submitted in a form that protects the privacy and confidentiality of research participants,” and that they “will be made freely available to all approved researchers to accelerate their studies.”
 
However, the NIH said that while it “encourages patenting of intellectual property,” the agency “seeks to prevent premature or inappropriate patents that impede future research.” The NIH did not define what it considers “premature” or “inappropriate” patents, or explain what it would do to “prevent” these from being issued.
 
"The NIH believes that the various and complex interests related to the submission of, and access to, [genome-wide association study] data must be discussed with the public," Elizabeth Nabel, director of National Heart, Lung, and Blood Institute and head of the NIH-wide team developing the policies, said in the statement.
 
The NIH said it will ask the public to discuss issues such as participant privacy concerns, potential risks and benefits for individual participants, professional recognition of investigators, and intellectual property rights.
 
The public has until Oct. 31 to comment. Comments can be submitted here and here.
 
The NIH said it also plans to hold a town hall meeting in early December.