Issue date: 4/11/08 Section: Campus

"Science education in the U.S. is so poor that many in the public, with their inadequate understanding, are very distrustful of anything that science does," Sheldon wrote in an e-mail.

NUgene's community advisory committee works to connect the public with the scientist. These "efforts to be open and to engage public education" may help alleviate some ethical concerns with the project, Sheldon wrote.

Despite the slow pace in establishing its own collection, the project is finding ways to expand its research efforts. It received a $3 million grant last fall from the National Institutes of Health to participate in the eMERGE Network, said Rex Chisholm, NUgene co-founder.

The network wants to be able to identify genetic "fingerprints" that are associated with a disease, Wolf said. The genome studies aren't as detailed as DNA sequencing, but once scientists study a large number of individuals, they can apply their knowledge on a larger scale.

"For a lot of these diseases where we're trying to look at multiple genetic components and environmental influences, it's hard to figure out who is at risk or who is at more risk relative to another individual," Wolf said.

The network's resources have allowed scientists to take their research to a new level, said Chisholm, who cited Type 2 diabetes and asthma as the project's current focuses.

"We're starting to think about how we can take our collection and use it with collections at other major medical centers to more thoroughly examine a variety of different diseases," Chisholm said.

NU researchers who use the NUgene resources may test about 100 samples from people linked to a disease.

Along with these, they look another 200 samples from people without the disease, known as the control group, Wolf said. Larger projects using samples from the eMERGE Network may request about 1,000 cases and 1,000 controls at minimum.

But researchers aren't sure yet if electronic medical record data can be applied to such large-scale genetic research. The network seeks to discover whether diagnoses can someday become automated, efficient and cheaper, said Dr. Eric Larson, executive director of the Center for Health Studies at the Group Health Cooperative in Seattle.

"The goal is eventually (to develop) research that leads to personalized medicine, as opposed to now, when we treat 1,000 people the same way to benefit 100," Larson said.

Smith, along with her NUgene colleagues, said she hopes the promise of this research will help persuade more patients to participate in the project.

"People want to help," she said. "They want to understand what's going on in themselves and help their family members have better health."



stephanie-wang@northwestern.edu

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