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Personalized Medicine Brings IT Imperative

by Malorye Allison

The push for personalized medicine just got a boost with the launches of the Wisconsin Genomics Initiative (WGI) and Harvard’s www.personalgenomes.org. The Wisconsin initiative is notable because it builds upon Marshfield Clinic’s collection of 20,000 DNA samples, described as “the nation’s biggest biobank.” The Harvard Personal Genome project, meanwhile, stands out because it aims to dispel the notion that secrecy and genomics must go hand in hand.

The contrast is stark. Projects like the one at Marshfield typically guarantee privacy for the patients who donate their DNA, and many arguments have arisen about how realistic that is. Privacy fears are one of the main reasons there aren’t already more clinical genomics projects as far along as Marshfield’s. The ten people in the Harvard Genome Project, meanwhile, are baring their genomes and phenomes (i.e. physical traits) to all.

Both projects hope to accelerate medical research. The folks behind the Harvard project claim that bypassing the secrecy will help them find useful links between genes and disease faster.

Typically, DNA samples are gathered from patients with a particular condition and compared to those of normal controls, but the layers of privacy protection often limit what can be done with each sample. The Wisconsin project is looking at a range of diseases including Alzheimer’s and glaucoma. Marshfield Clinic is working on this project with University of Wisconsin School of Medicine and Public Health (UWSMPH), the Medical College of Wisconsin (MCW), University of Wisconsin-Milwaukee. The Wisconsin-based Clinic also boasts a “fully integrated electronic medical record and more than 20 years of medical history.”

The Harvard Genome Project’s first 10 participants all had to “demonstrate the equivalent of a master’s degree in genetics,” the New York Times reports, so they would fully understand the implications of putting so much information about their health out into the public domain. The recent passage of the Genetic Information Non-Discrimination Act should protect these pioneers from discrimination by employers or insurers, but there are plenty of other repercussions possible. Data on the health and genomes of those first ten people were posted this week, now the project is trying to recruit 100,000 new participants.

Personalized medicine seems like a good way to help hold down costs and greatly improve care. But at least for now, most patients will want to be assured that their genetic information cannot fall into the wrong hands.

Just as important, doctors will not be able to take meaningful action if health IT tools aren’t there to assist them. The new paradigm of personalized medicine is using tests to guide prescribing. With about 1,500 tests on the market, some that are complicated to interpret, physicians will surely need computer-based guidance to navigate the new path to personalized medicine.

See more about the WGI

Visit the Harvard Personal Genome Project