The current law on the newborn screening program “is not working for our children, their families or for public health,” Rep. Kim Norton (DFL-Rochester) said Thursday on the House floor as she proposed changes to the law.
Norton and Sen. John Marty (DFL-Roseville) sponsor HF2526/ SF2047*, which would modify the newborn screening program. The amended bill passed the House 69-58 and will return to the Senate for possible concurrence.
[Watch a full video archive of Thursday's floor session here]
The Department of Health’s newborn screening program tests babies for rare disorders through a blood spot test taken when the baby is 24 to 48 hours old. The program includes testing for hearing loss and congenital heart disease.
In 2011, the Minnesota Supreme Court ruled that blood spots taken and stored as part of the newborn screening program contained genetic information and that the program was at odds with the state’s genetic privacy law. Part of the ruling required the department to destroy about 1.1 million stored samples, Norton said.
“Since 1965 we’ve been collecting the blood spots to support newborn screening,” Norton said in an interview. “That wealth of information has been destroyed… It’s just devastated the depth and breadth of research samples that we had.”
Currently, the department keeps blood spots for 71 days when test results are negative for a disorder and 24 months for positive results. These storage limitations are in place unless the department receives written consent from the parents to store the blood spots and test results for an extended period of time.
Norton’s bill would allow the department to store blood spots and test results indefinitely unless parents ask to have the information destroyed, a request parents could make at any time using required forms. Individuals could request at age 18 to have their own results destroyed.
Rep. Mary Liz Holberg (R-Lakeville) believes the department should have done more to follow through on their commitment to educate parents about the importance of the newborn screening program and the need to obtain written consent for research. “The Department of Health failed miserably in that agreement.”
Norton agreed that parents should receive more information about the program, and she said her bill has provisions to strengthen education requirements. The department would be required to send information and forms on newborn screening to childbirth education centers in addition to health providers.
The bill includes potential other changes to the storage of blood spots and test results and consent.
Parents could refuse screening or they could choose to allow newborn screening, but refuse storage of blood spots or test results. If parents decide against the test or storage, they would need to complete the required form and the department would destroy blood spots within 30 days and test results within 30 days or the earliest time according to federal laboratory regulations.
The department would be able to use blood spots and test results for public health research and research unrelated to newborn screening only if parents provide written consent for such research. Additionally, the department would have authority to use the blood spots and test results to develop more newborn screening tests and for “studies related to newborn screening,” a provision that concerns Holberg.
“By virtue of the fact that they’re using newborn screening blood spots, it’s related to newborn screening,” Holberg said in an interview. “So they can do whatever type of research they want without any parental consent and the parents only option under the bill is to have everything destroyed.”
Holberg told members on the House floor they should respect the parents who want more privacy and choices than to participate in a program that applies a broad definition of research or to have the information destroyed. “We can do much better than this,” she said.
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