When one man learned his father had Parkinson's disease, he contacted scientists at Northwestern's NUgene Project, hoping to find out his hereditary risk for the degenerative disorder.
"While we may not be able to tell him specifically what (his father's diagnosis) means to him, the kind of research we tend to conduct may help his children or other people to know more about a condition like Parkinson's disease," said Maureen Smith, clinical director of NUgene, a long-term genetic research study.
This case is typical of a volunteer who has a genetic link to a debilitating disease. But others who have been approached may hesitate in donating their DNA for research purposes, Smith said. As a result, the project hasn't been able to build its blood sample collection for NU researchers as initially planned.
Launched in 2002 by the Center for Genetic Medicine, part of the Feinberg School of Medicine, NUgene had set a five-year goal of gathering 100,000 blood samples from volunteer patients within the NU health care system, said project director Wendy Wolf, Feinberg '00. But the program has only collected 8,000 collected samples, 2,000 of which have been given out for studies.
"A lot of people have concerns about electronic medical records or any kind of electronic data that is stored about them," Smith said. "Everybody is worried about identity theft."
Some people may fear insurance policies will cost more if companies find out about an increased risk for certain diseases, she said.
To ensure patient confidentiality, the project stores volunteers' medical records in a secure database and provides "de-identified" DNA information from the blood samples to scientists, who examine how well drugs work and causes of common diseases, Smith said. Names and other personal identifiers are never associated with the samples, she added.
Both Smith and NU bioethics Prof. Mark Sheldon said the public may be confused about the actual nature and intent of genetic research.
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