Blood Samples Raise Questions of Privacy
Some Samples Are Stored and Used For Research Without Parents' Consent
By Rob Stein
Washington 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."
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.
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." Read more here.