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Blood Samples Raise Questions Of Privacy

Publication Date: 
June 30, 2009
Source: 
The Washington Post
Author: 
Rob Stein

Professor Henry T. "Hank" Greely talked to the Washington Post about the ethics of "warehousing" blood samples for genetic research. Rob Stein reports:

Matthew Brzica and his wife hardly noticed when the hospital took a few drops of blood from each of their four newborn children for routine genetic testing. But then they discovered that the state had kept the dried blood samples ever since -- and was making them available to scientists for medical research.

...

The couple is among a group of parents challenging Minnesota's practice of storing babies' blood samples and allowing researchers to study them without their permission. The confrontation, and a similar one in Texas, has focused attention on the practice at a time when there is increasing interest in using millions of these collected "blood spots" to study diseases.

...

The storage and use of the blood is raising many questions, including whether states should be required to get parents' consent before keeping the samples long-term or making them available to scientists, and whether parents should be consulted about the types of studies for which they are used. The concern has prompted a federal advisory panel to begin reviewing such issues.

...

...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."