Newborn screening bill

Newborns in Minnesota are screened for 53 rare and serious medical conditions.

A plan to clarify what testing can be done, what options the parents have and other changes to newborn screening laws may soon become law.

Sponsored by Rep. Paul Thissen (DFL-Mpls) and Sen. Ann Lynch (DFL-Rochester), HF3438/SF3138* would require that prior to a blood sample being taken from a newborn, parents or the legal guardian would be told that the sample could be used to test for hereditary and congenital disorders, held at the Health Department for at least two years and possibly used for research.

When a conference committee report was presented on the House floor May 15, there was an additional provision requiring the person who performs the test to document that the parents or legal guardians have received the information and had an opportunity to ask questions.

Already passed by the Senate earlier in the day 51-12, the bill was approved by the House 103-29. It now awaits action by the governor.

Under the bill, parents would be told the benefits and consequences of declining the tests, and given the option to refuse either testing, storage, research or all. Additionally, the department would have to provide a report to the Legislature on the newborn screening process by Jan. 15, 2009.

The proposal came about because of a recent statute requiring written consent for all genetic material collection. One can opt into the program only with written consent. Under the newborn screening proposal, testing would be done unless the parents opt-out.