Newborns' Blood Samples Are Used for Research Without Parents' Consent

"I've never heard anyone complain that their privacy was violated or their dried blood was used for something that negatively impacted them," said Michael S. Watson of the American College of Medical Genetics, which has the NIH contract to create an electronic database of newborn blood samples from across the country.

But the states can still link each sample to an individual child -- and that worries some parents, patient groups, bioethicists and privacy advocates, especially with advances in genetics and electronic data banks linking medical information from different sources.

"It's fine and good to say these can't be identified, but how real is that?" said Hank Greely, a Stanford University bioethicist. "Just because you don't have a name or Social Security number doesn't mean you can't identify it. Once we start using DNA for more and more things like regular medical records, somebody could do a cross-check and say whose blood it is."

As scientists continue to discover new genetic markers, many wonder what such databases might reveal.

"I'm not a big scaremonger about the dangers of DNA medicine," Greely said. "But you could use someone's DNA to make some inferences about their future health, about their future behavior, and if you got samples from their parents or a DNA databank, you can make inferences about family relationships."

Because of those and other concerns, parents and privacy activists in Minnesota are asking that more than 800,000 blood spots that have been stored without parents' approval since 1997 be destroyed.

"Once learning the genetics of one child, you could see an insurance company seeing that possibility for the next child and making it clear that this is a preexisting condition that the company would not cover. Or perhaps an employer that found out about it wouldn't want to have us as an employee," said Twila Brase of the Citizens' Council on Health Care in St. Paul.

Guaranteeing Privacy

The Minnesota case prompted a similar parents' lawsuit in March against Texas, which since 2002 has stored an estimated 4 million samples. The litigation spurred the Texas legislature to require the state health department to start getting parents' permission to store the samples and honor requests that samples be destroyed. But the lawsuit is still pending over what should be done with the samples already on file.

"I don't want to sound paranoid, but I'm not comfortable with a governmental agency having this information, with potentially the ability to share it with sister governmental agencies, such as criminal agencies," said Maryann Overath, an Austin lawyer with two sons who sued the state.

Law enforcement agencies have been cataloguing millions of DNA fingerprints in recent years, raising similar concerns.

State officials argue that strict safeguards protect the privacy of information associated with the newborn blood samples and say details about a child's medical history are provided to researchers only if parents are contacted individually for approval.

"Privacy is very important, and we protect it every way we can," said David Orren, the Minnesota health department's chief legal counsel.