Health Information Management

NIH blocks public access to DNA database to protect privacy

HIPAA Weekly Advisor, September 15, 2008

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National Institute of Health (NIH) officials have removed two databases containing patient DNA information from its public Web site after a recent study proved DNA to be personally identifiable even in small quantities, the Los Angeles Times reported August 29.
 
A study published in a Public Library of Science journal found that using a new type of forensic DNA analysis makes it possible to identify tiny quantities of DNA, according to the newspaper. Because genetic data could be used to confirm the identity of participants in medical research studies, NIH removed the genetic information of more than 60,000 patients from its Web site to protect patients’ privacy.
 
"It's possible, but the likelihood is quite low" that patients’ privacy may have been violated prior to the removal of the data from the NIH Web site, Elizabeth Nabel, MD, head of the NIH genetic studies oversight body, told the Los Angeles Times. "We wanted to err on the side of caution."
 
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