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VA to launch large-scale genetic data collection

BY Nancy Ferris
Published on Dec. 27, 2006

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Aiming for breakthroughs in genomic medicine, the Department of Veterans Affairs has begun collecting genetic information from patients and will link the information to each patient’s electronic health record.

VA officials expect that the large-scale project will reveal links between certain diseases and the genetic makeup of the individuals who are prone to them. It also could increase scientists’ understanding of the effects of genetics and the environment on people’s health.

The goal is to find new ways to prevent and treat diseases, based on greater knowledge of the underlying influences on human health. Scientists already know that genetic makeup influences how people respond to some medications.

Dr. Joel Kupersmith, chief research and development officer at the VA, told the American Health Information Community (AHIC) this fall that the department is a good place for such a project because of its size, integration of research with medical treatment and well-established EHR system.

“We feel it is a strongly veteran-centric initiative,” Kupersmith said. The genetic information is collected only from patients who have consented to the test.

As of the end of October, the department had collected more than 30,000 specimens and had capacity to bank 100,000, he said. Those specimens were gathered in a pilot project in connection with clinical trials of new drugs, Kupersmith said. “We are now ready to broaden this pilot project,” he added.

VA spokesman Terry Jemison said the pace of the project’s growth has yet to be determined. “Significant expansions of sample collection activities will only take place after plans have been thoroughly discussed with [a federal advisory committee], veterans and veterans’ service organizations, and will depend upon the budgetary resources available,” he said. He declined to say how much the department plans to spend on the project this year.

At an earlier meeting, AHIC, a high-level, public/private advisory commission chaired by Department Health and Human Services Secretary Mike Leavitt, was told that it is unclear how best to incorporate genetic information into EHRs.

“What we consider the gorilla in the room to address is the ethical and privacy standards” for handling and disclosing genetic information, Kupersmith told AHIC.

Dr. Kathy Hudson, founder of the Genetics and Public Policy Center at Johns Hopkins University, told the commission that legislation is needed to protect genetic information.

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