Storing baby blood samples pits privacy versus science
INDIANAPOLIS — Two-day-old Ellie Bailey squirms in a hospital bassinet and cries as her tiny left heel is squeezed and then pricked with a needle to draw a blood sample. An Indianapolis hospital technician quickly saturates six circles on a special filter card with the child’s blood.
Ellie is among some 4 million newborns in the United States who will have blood drawn this year to screen them for serious inherited diseases such as sickle cell anemia, which can cause organ damage, and the metabolic disease phenylketonuria, or PKU, which can lead to mental disabilities.
Newborn screening saves or improves the lives of about 12,000 newborns each year by swiftly identifying therapies they might need, said Jelili Ojodu, director of newborn screening and genetics with the Association of Public Health Laboratories. ‘What could happen?’
But what happens to the dried blood samples on those cards after the testing that’s mandatory in all 50 states is completed has sparked legal battles in some states. Minnesota and Texas have destroyed some 6.4 million samples following lawsuits. And in Indiana, the parents of a 9-year-old suburban Indianapolis girl are seeking the same for up to 2.5 million samples collected over two decades and stored in 600 boxes at a state warehouse.
“Her parents’ main concern is that down the road, who knows what could happen with these samples?” said Jonathan Little, an attorney for parents of the girl, identified in court documents only as A.B. Doe.
The case poses a dilemma: How can society balance the right to privacy with the needs of science and medical research?
The Indiana lawsuit was dismissed by a trial court last year and in April by the Indiana Court of Appeals.
Both courts found the girl was in no imminent danger of suffering harm from the state holding onto her sample. Her attorneys plan to appeal to the Indiana Supreme Court this week. Genetic privacy
In an era of increasingly sophisticated genetic analysis, some privacy advocates fear insurance companies could access blood samples and charge higher premiums for people found to have a genetic predisposition to diseases such as Alzheimer’s.
“The question is, ‘These cards are being collected for a very specific purpose, and once they have met that purpose what’s the necessity for keeping these blood stains?’ ” said Sheldon Krimsky, acting executive director of the Cambridge.Mass.-based Council for Responsible Genetics.
He said law enforcement could also potentially access states’ newborn blood stores to use them to create DNA databases of law-abiding citizens.
Such worries are “really a far stretch” and not based on actual threats to a person’s genetic privacy, said Natasha Bonhomme, vice president of strategic development for the Genetic Alliance, a Washington, D.C.-based nonprofit health advocacy group.
In 2009, Texas destroyed some 5.3 million newborn blood samples as part of a settlement of a lawsuit, and Texas lawmakers also set into law an opt-out policy for parents who object to the state using their child’s blood for research.