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 The practice of storing newborn babies' blood samples for researchers to study without parental permission, and then warehousing them in neonatal biobanks, is beginning to see the light of day.
About 4 million babies are born every year in hospitals across the United States. Most states require that a blood sample, known as a blood spot, be taken from each and every baby and screened for genetic disorders and diseases. Refusing for religious or other reasons has been an option, but little did parents know that all that DNA has been saved without their permission.
Many states have been saving the spots, some for as many as ten years, some indefinitely, and some have now deposited them in neonatal biobanks for research and other reasons. A spokesperson for Genetic Alliance, a coalition that promotes genetics research, says, "We consider them a national treasure. We think they offer us the beginnings of a national blood bank to understand disease at an early age and follow people longitudinally over time."
Enter the National Institutes of Health. NIH is now funding a $13.5 million, five-year project aimed at creating a "virtual repository" of blood samples from around the country. This would consist of a giant database containing much information concerning the blood spots.
The qualifying statement to put parents at ease is: Don’t worry; in most cases, all identifying information is stripped from the samples. But that would mean not in all cases, then.
Some state officials admit that the states can still link each sample to an individual child. So the statement to put parents at ease is meaningless. State officials then argue that strict safeguards to protect privacy of information about a child's medical history are provided to researchers only if parents are contacted individually for approval.
Michael S. Watson of the American College of Medical Genetics — the group that has the contract to create the new database of blood samples — says no one has ever complained because their privacy was violated, or that they were impacted in a negative way.
There are those who, upon learning of the practice by states to save all newborns’ blood samples, are yelling “foul,” pointing out the dangers, both ethical and privacy-related, in such a system.
Maryann Overath, an Austin, Texas, lawyer ended up suing the state over the unauthorized storing of her sons’ blood spots. "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," she said.
The potential for abuse is only too apparent, even if consent issues are properly resolved. Many suspect that once physically and digitally recorded, blood spots could be used by insurance companies to project possible future health problems, in criminal nation-wide data bases, or by the government to track individual health patterns.
The federal agency entitled Advisory Committee on Heritable Disorders in Newborns and Children, which is part of the Department of Health and Human Services, is concerned about the emerging debate on saving blood spots, and is worried that their biobank scheme may be threatened. So in the interests of “transparency” they are willing to discuss the issue at their September meeting.
Rodney Howell, who chairs the ACHDNC, offered a typical bureaucratic comment. His words are perfectly in accord with the present administration’s carefully crafted public rhetoric that what they are presenting are innocent little ideas only for our good health: "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," he said.
Caught in the act, the soft soaping begins in earnest. Check out the ACHDNC's website where parents are gently sold into being grateful participants in the program — with not one word about the blood spots being banked.
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