INDIANAPOLIS — Two-day-old Ellie Bailey squirms in a hospital bassinet and cries as her tiny left heel is squeezed and pricked with a needle to draw a blood sample. A hospital technician quickly saturates six circles on a special filter card with her blood.
Ellie is among 4 million newborns in the United States who will have blood drawn this year to screen for serious inherited diseases such as sickle cell anemia, which can cause organ damage, and the metabolic disease phenylketonuria, which can lead to mental disabilities.
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.
But what happens to the samples after the testing — mandatory in all 50 states — is completed has sparked legal battles. Minnesota and Texas have destroyed 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 problem: 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. Her attorneys plan to appeal to the Indiana Supreme Court.
In an era of increasingly sophisticated genetic analysis, some privacy advocates fear insurance companies could access blood samples and charge higher premiums for people with a genetic predisposition to diseases such as Alzheimer’s.
Minnesota destroyed 1.1 million newborn blood samples and an additional 900,000 test results in 2014 after a lawsuit.
In 2009, Texas destroyed 5.3 million newborn blood samples as part of a settlement of a similar lawsuit.
Attorneys for Indiana say the 2.5 million blood samples at the heart of the pending lawsuit won’t be used for medical research but argue the state has an interest in holding onto them, such as for evidence in missing-persons or medical-malpractice cases.
Starting in June 2013, Indiana tried to solve the problem by asking parents for permission. The parents of just over 63,000 infants — about a quarter of the babies born in Indiana in the past three years — have consented, said Jennifer O’Malley, a state Department of Health spokeswoman.
Those now include 27-year-old Jessica Bailey, the mother of Ellie. She and her husband, Mark, said they don’t share concerns about the blood’s possible misuse and believe there’s great potential in allowing its use for medical research.
Indiana has posted a form on the health department website allowing parents to request that their child’s blood sample be destroyed, no matter when it was collected. That’s not enough for the father of the 9-year-old girl who sued the state. He asked The Associated Press not to use his name because it would identify his daughter.
He supports disease-screening for newborns but believes it’s time for the state to dispose of the blood samples collected between 1991 and May 2013.
