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Genetic banking - NUgene Project opens doors to future treatments and cures

by Priscilla Kunamalla
June 03, 2011


Courtesy of NUgene Project, Northwestern University

The NUgene Project at Northwestern University has currently enrolled over 10,300 participants. The project plans to enroll 100,000 participants and could soon make it possible for doctors to predict which patients could get diseases such as Alzheimer's, diabetes and heart disease.

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NUgene Project
The NUgene Project, a gene bank at Northwestern University, allows you to help medical researchers uncover the genetic basis of diseases such as cancer, diabetes and heart disease.

Provide consent, fill out a questionnaire, donate a tube of blood and your DNA is on its way to add a unique blueprint to the extensive database of genetic information collected from more than 10,300 people so far.

For participants, the entire process takes less than 30 minutes.

"It’s probably the easiest study they’ll ever participant in, but probably the one that will go the farthest in helping scientists and medical professionals understand how to treat common conditions in the future,” said genetic counselor Maureen E. Smith, director of NUgene.

The project, with a goal to enroll 100,000 people, may soon make it possible for doctors to predict the likelihood of patients getting diseases such as Alzheimer’s. The project could help identify genetic treatments or therapies, according to Smith.

Researchers have already used the biobank to study conditions such as aneurysms.

Launched in 2002, the NUgene Project is a long-term research study that collects and stores genetic samples and medical information from consenting participants over the age of 18 who already have electronic health records at Northwestern-affiliated hospitals and clinics.

“It’s a pretty simple idea,” said medical geneticist Rex L. Chisholm, who is lead investigator of the project and vice dean for scientific affairs and graduate studies at the Northwestern University Feinberg School of Medicine. “In order to get to the next step after the Human Genome Project, what we need is lots of DNA samples and rich sets of information to allow researchers to do a large number of studies to identify the genetic basis of common diseases.”

The project, sponsored by the Center for Genetic Medicine, a non-profit research organization at Northwestern, provides researchers affiliated with the university to access participants’ DNA samples and "de-identified" health information.

Once participants enroll in the study and have blood drawn, the tube of blood goes to a laboratory where it is barcoded. Personal identifiers like their names and addresses are not associated with the sample.

Participants’ DNA is extracted from the sample of blood and sent for long-term secure storage in freezers at two separate locations on campus until researchers request to use it for their studies.

For example, an investigator might be interested in screening and studying 400 genetic samples from people who have arthritis, Smith said. NUgene would use its access to the participants’ electronic health records to identify which ones have the condition, which could then help researchers discover genetic similarities.

"Every single one of those 10,000 plus participants is very important to us - the young, old, healthy and not so healthy,” Smith said. “They are all contributing to genetic research in a very altruistic way.”

Smith said having electronic health records that are updated when participants see their doctors each year is more efficient than sending out surveys or contacting people each time researchers want to use their sample in a study.

A person’s participation is truly altruistic, because neither they nor their doctors receive the results of any research done on their DNA.

According to Smith both participants with medical conditions and those with no known conditions are critically important to the study.

“People who participate who don’t have a particular condition may feel that they don’t contribute to research in a meaningful way. But they are critically important,” Smith said. “They enable scientists to have a control group, which is essential in any good scientific study.”

Their samples could go a long way, contributing to eight or 10 studies in one year, according to Smith.

Despite the potential long-term benefits of genetic banking, many people may still have reservations about sharing their DNA information.

“I think people have started to become more comfortable with what sharing information about ourselves means, but our job as researchers to help the public understand how valuable their data is to research,” Smith said. “We know it’s remarkable that one tube of blood can be used for hundreds of different studies, but it’s on the researchers to communication that to people.

Caitlin Brown, who works as a research coordinator at the NUgene Project, said a secure system stores the electronic health information. The project thoroughly de-identifies the samples of DNA and only gives researchers information that is relevant to their studies.

That has reassured many of the participants she’s recruited into the study, Brown said.

Brown is a participant in the study herself. She decided to give a sample of blood while she was in the lab to have blood drawn as part of her graduate school requirements.

“I never had any hesitation because I believe collaborating and sharing is the only way medical research is going to get anywhere,” Brown said. “Certainly being a research coordinator has helped give me that insight, but I do think I would have participated anyway.”

Similar genetic biobanking studies have been established across the country. The Marshfield Clinic Personalized Medicine Research Project in Marshfield, Wis., launched in 2002.

Vanderbilt University’s BioVU DNA biobank and database opened in 2010.

“I encourage people to think about participating the same way they think about donating to the American Cancer Society or participating in a walk for the American Heart Association,” Chisholm said. “It’s because their generosity leads them to do something for humanity at large. They do it for their children’s future and their grandchildren’s future.”