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Confidentiality of genetic databases questioned by Stanford researchers

nly vary from person to person, accounting for many genetic differences. Each person has about 5 million such sites in their DNA. Using a statistical model, the researchers found that matching 100 of these sites would identify an individual to a high degree of certainty.

In theory, if a person collected a small amount of genetic information about a former research subject, he could match it to database material in the future to get personal medical information about the subject.

Why worry? Lin said that insurance companies and employers potentially have an interest in learning whether a person is prone to certain illnesses, and that malevolent individuals might also try to seek out this type of information. So Lin, along with advisor Russ Altman, MD, PhD, associate professor of genetics and of medicine, and statistics professor Art Owen, PhD, looked for ways to disguise the data while still maintaining its usefulness. For example, a computer program could randomly change one in 10 data points - a method similar to those used with other kinds of sensitive research data, such as census results. But, Altman said, "We realized that anything we tried ruined the data for research."

The best solution, the group concluded, is probably to put such databases behind firewalls, and only allow access to those who can prove they are researchers and who pledge to protect confidentiality. But they don't rule out other solutions. For now, they hope their paper will induce researchers to address privacy issues early on in genetic database development.


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Contact: Amy Adams
amyadams@stanford.edu
650-723-3900
Stanford University Medical Center
8-Jul-2004


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