Minnesota law requires written informed consent for the collection of genetic information.
HF1341, sponsored by Rep. Paul Thissen (DFL-Mpls), would exempt newborn genetic screening from this process, requiring that testing be done unless the parents opt out of the program. Under the bill, the Health Department would collect and test the samples for heritable and congenital disorders and destroy them within 25 months of birth.
The bill was approved March 17 by the House Health Care and Human Services Policy and Oversight Committee and now goes to the House Civil Justice Committee. A companion, SF1478, sponsored by Sen. Linda Scheid (DFL-Brooklyn Park), awaits action by the Senate Health, Housing and Family Security Committee.
Since 1997, the department has collected and stored newborn screening samples. But, in 2007, a Minnesota administrative law judge ruled the department violates the Genetic Privacy Law in collecting the information.
Thissen said the bill is an attempt to, “save the newborn screening program,” while addressing concerns over the length of time the samples are stored. Gov. Tim Pawlenty vetoed a similar bill in 2008 that would have allowed the department to store the samples indefinitely.
Twila Brase, president of Citizens’ Council on Health Care, said the bill is “about the storage, use and dissemination of newborn blood and DNA without the consent of parents.” It would also allow hospital staff to sign a form saying they have informed the parents of their options, rather than requiring a parental signature.
The department’s Web site states the program tests infants for 53 rare and serious medical conditions that if not detected can lead to chronic conditions or death.
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