Northwestern will begin pushing its way to the forefront of genetic research next week when NU’s Center for Genetic Medicine starts building a gene bank — just the second of its kind in the country.
Within the next few days, researchers will begin a campaign to gather the genetic codes of 100,000 people over the next five to six years, said Rex Chisholm, director of NU’s Center for Genetic Medicine.
The project, NUgene, will create a bank of genetic data linked with medical histories. Researchers will use the database to compare the genetic makeup of individuals and identify characteristics unique to certain diseases.
“One of the goals of having genetic information is to improve diagnosis, prevention and understanding of what genes are involved in a disease — identifying potential targets (for treatment),” Chisholm said. “We can use this information to understand who might be someone who responds well to a particular drug, or, more importantly, who might respond badly.”
The first such bank was built at the Marshfield Clinic, located in Wisconsin. The Mayo Clinic, Johns Hopkins University, and Duke University are beginning similar programs, according to Wendy Wolf, coordinator for NUgene .
About 100,000 donors are necessary to create a large enough pool for researchers to use in comparison studies, he said. The five-person NUgene research team will begin contacting patients at NU’s outpatient clinics in downtown Chicago, Wolf said. Researchers also will recruit volunteers from Northwestern Memorial Hospital and Evanston Northwestern Healthcare.
By using data from patients of NU-affiliated health centers, researchers can access volunteers’ medical records. Specially designed computer networks then will link gene codes to the records, Chisholm said.
“One of the keys is — since we’re doing this electronically — no human goes through the records,” he said.
Once the information is collected, the donor’s name is not connected with a genetic code and records, Chisholm said.
“It’s very important (in conjunction) with these projects that society do what is most important — ensure nobody is discriminated against according to their genetic information,” he said.
Researchers have spent the past year developing security measures before recruiting volunteers and collecting data.
People interested in making a donation will meet with a genetic counselor, who will explain the program, Wolf said. After signing a consent form and filling out a brief medical history, the patient’s DNA will be extracted from a blood sample. Researchers will sequence the genes from the DNA and enter the data into the bank.
“We want people to participate and donate information just like you would make a contribution to the American Medical Association, (American Cancer Society) or March of Dimes,” Chisholm said.
After enough samples are gathered, researchers will begin analyzing the sequences.
Other institutions, such as pharmaceutical companies, could share the data the better products, Chisholm said. Although companies will pay for this data, he does not consider it as the sale of genetic information for profit.
Chisholm said NU, Northwestern Memorial Hospital and Evanston Northwestern Healthcare have invested about $3 million to fund the project to be used in the next three years.
“It will be several years before there is any useful data,” he said.
