Blood Feud

Parents Concerned That States Are Banking Blood Samples From Newborns Without Parents' Consent

July 06, 2009|By Rob Stein | Rob Stein,The Washington Post

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. n "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 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."

Hospitals prick the heels of more than 4 million babies born each year in the United States to collect a few drops of blood under state programs requiring that all newborns be screened for dozens of genetic disorders. The programs enable doctors to save lives and prevent permanent neurological damage by diagnosing and treating the conditions early.

Although parents are usually informed about the tests and often can opt out if they object for religious and other reasons, many give it little thought in the rush and exhaustion of a birth. And parents are generally not asked for permission to store the samples or use them for research. Each state determines what is done with the blood spots afterward.

The stored samples are mostly used to validate the accuracy of newborn screening and evaluate new tests. But scientists are also using them for other types of research, including to study specific genetic disorders, explore the frequency and causes of birth defects, decipher how genes and environmental factors interact, and probe whether exposure to chemical pollutants early in development plays a role in cancer and other diseases.

Research projects are approved, officials in Maryland and other states said, only after undergoing careful scientific and ethical review. In most cases, all identifying information is stripped from the samples.

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."

"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.

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 pending over what should be done with the samples on file.

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 blood samples and say details about a child's medical history are provided to researchers only if parents are contacted individually for approval.

Concerned that the debate might undermine the newborn screening programs, the federal Advisory Committee on Heritable Disorders in Newborns and Children will discuss the issue in September.

"There are obviously legal and ethical issues that need further discussion," said Rodney Howell, who chairs the committee. "Unfortunately we live in a world of conspiracy theories. We want to inform people that these spots are retained in some states and that they are carefully guarded. We want to be totally transparent."

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