Newborn screening brings call for greater privacy protections

A child is born in Minnesota is screened for 50 rare and serious medical conditions. But court rulings have called into question how the state retains the blood samples — that it violates the Genetic Privacy Law.

The Legislature has been grappling with how to keep the program viable while protecting privacy and ensuring that parents clearly understand their rights as to what happens to blood samples and the testing results the Health Department collects. 

Rep. Kim Norton (DFL-Rochester) says the bill she sponsors, HF2526, would bring clarity to the issue; others say that it would move the state a step backward in its efforts to protect genetic privacy.

“I have been quite surprised at the articles stating that we are making radical changes. We’re not,” Norton told the House Civil Law Committee Tuesday. She said the bill would clear up confusion caused by an amendment to statute in 2012 that caused “unforeseen outcomes.”

Passed on a 9-8 vote, the bill was sent to the House floor. The companion, SF2047, sponsored by Sen. John Marty (DFL-Roseville), awaits a hearing by the Senate Judiciary Committee.

The bill would:

·         require greater information about the program to parents, including how the blood samples and test results would be used;

·         give legal guardians the right to elect that no newborn screening be performed; and

·         allow storage of the blood samples by the department unless the parent or legal guardian opts out.

The provisions would bring together privacy advocates and medical researchers, with no one denying that genetic testing is important or that privacy rights should not be considered.

“Some people have characterized this as going backwards, others would say that we are being a leader in genetic privacy. … It depends on how you look at the issue,” said Rep. Mary Liz Holberg (R-Lakeville). “This body has to really decide whether it wants to support our genetic information protections. This takes us back further than where we were before the court decision.”

Bill supporters say the proposed changes are needed to keep the program viable into the future.

Dr. Emily Borman-Shoap spoke on behalf of the Minnesota Chapter of the American Academy of Pediatrics.

She said that testing helps doctors with an early diagnosis before a baby shows any symptoms. It allows the health care provider to act early and prevent long-term devastating health consequences including death. The current law, she said, “has already undermined the program, and this will worsen unless we restore it this session.”