Specimens held by the Health Department for disease testing without permission violated privacy, a court ruled.
Two months after losing a court battle over genetic privacy, the Minnesota Department of Health has started destroying a portion of the blood samples it has collected as part of a program to test newborns for rare genetic illnesses.
"For the first time in almost 20 years, we're going to begin destroying a valuable public health resource," Dr. Edward Ehlinger, the health commissioner, said in a statement released Tuesday.
The Health Department, which has been collecting the specimens since 1997, had fought to retain the blood spots for research purposes.
But in November, the Minnesota Supreme Court ruled that the state had no right to keep the specimens or to use them for research without consent from the infants' parents. Nine families had sued the state, accusing it of violating the 2006 Genetic Information Act.
The court ruling does not interfere with the screening program itself, which tests Minnesota newborns for 53 serious disorders. Among other things, it tests for cystic fibrosis and hormone deficiencies that can be controlled or treated with diet or medication before the symptoms surface. In some cases, the disorders would be fatal without early intervention.
"We will continue to screen babies," said Aggie Leitheiser, assistant health commissioner.
The department collects blood spots from each of the approximately 200 infants born in Minnesota every day. The drops are taken from the baby's heel 24 to 48 hours after birth. Under the court ruling, the specimens must be destroyed after 71 days.
On Monday, Hennepin County District Judge Mel Dickstein ruled that the state could begin destroying samples collected on or after the Supreme Court's decision, which was issued Nov. 16.
But the state still has about 1 million samples in storage, dating back to the start of the program in 1997, according to Leitheiser.
Leitheiser said those samples will be destroyed as well, but that the issue is still tied up in ongoing litigation.
She said the District Court still must decide whether the parents who sued the state over the blood spots will be entitled to damages. She said it may be another year before those cases are resolved, along with the fate of the remaining samples.
Maura Lerner • 612-673-7384