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 Copy on fileWashington Post Staff Writer Tuesday, June 30, 2009 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. "They're just taking DNA from young kids right out of the womb and putting it into a warehouse," said Brzica, of Victoria, Minn. "DNA is what makes us who we are. It's just not right." ... Michigan, for example, is moving millions of samples from a state warehouse in Lansing to freezers in a new "neonatal biobank" in Detroit in the hopes of helping make the economically downtrodden city a center for biomedical research. The National Institutes of Health, meanwhile, is funding a $13.5 million, five-year project aimed at creating a "virtual repository" of blood samples from around the country. 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. "There has not been a good national discussion about the use of these samples," said Jeffrey Botkin, a pediatrician and bioethicist at the University of Utah who is studying policies and attitudes about the newborn blood samples as part of a federally funded project. "Genetics is an area that touches a nerve. The public is concerned about massive databases."... 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."... 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. "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... |
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anomalocaris 30-Jun-09, 12:56 |
I don't think |
