Minnesota law requires written informed consent for the collection of any genetic information.
A bill, sponsored by Rep. Paul Thissen (DFL-Mpls) and Sen. Ann Lynch (DFL-Rochester), proposed exempting newborn genetic screening from this process, requiring that testing be done unless the parents opt-out of the program. However, it was vetoed by Gov. Tim Pawlenty.
In addition to the consent exemption, the bill would have required that prior to a blood sample being taken from a newborn, parents or the legal guardian would have to 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. The person administering the test would have to document that the parents or legal guardians received the information and had an opportunity to ask questions.
Additionally, the department would have provided a report to the Legislature on the newborn screening process by Jan. 15, 2009.
“This bill would make some improvements to the current law relating to the notice parents receive before genetic information is collected. I support these provisions,” the governor wrote in his veto letter. “However, this bill would also expressly exempt the Department of Health from laws which require written informed consent for the Department to store and use personally identifiable genetic information for non-screening purposes.”
Pawlenty also wrote, “Government handling and storage of genetic information is a serious matter. Removing the requirements for express authorization from parents regarding the long-term storage and potential future uses of genetic samples, especially when such storage and use is not related to newborn screening, is concerning.”
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