Parents’ newborn screening rights

Parents’ newborn screening rights

When a child is born in Minnesota, they are screened for 53 rare and serious medical conditions. This process, however, conflicts with state law governing genetic information collection.

Sponsored by Rep. Paul Thissen (DFL-Mpls), HF3438 would rectify that. It was approved by the House Public Safety and Civil Justice Committee March 7, and awaits action by the House Health and Human Services Committee.

Thissen said the day after the birth of his third child, his family was told about an unknown health condition. “Had we not found out, he would have gotten very sick. Because of the screening, we caught it and he’s doing great.”

Under current statute, written consent must be given for genetic material collection, and this would include all newborn screenings. One can ‘opt-in’ to the program only with written consent. Under the bill, newborn screening would be done unless the procedure was declined, meaning the parents could ‘opt-out.’

This distinction is problematic, said Twila Brase, president of the Citizens’ Council on Health Care.

Brase said that parents should not only be given an opportunity to ‘opt-in,’ but that they should be told the samples taken are not for newborn tests, but genetic testing. According to Brase, there are now more than 1.4 million profiles of newborns in a state database, with more than 700,000 genetic samples on file. These samples are now considered government property, and were taken without the parents’ knowledge or consent, she said.

Joanne Bartkus, director of the Public Health Laboratory Division at the Department of Health, said 73,000 children are annually screened for medical conditions, and that it’s important to continue the program. The bill would help strengthen how information is given to parents.

The bill would also allow parents to decline to have test results used for research, and would require the department to present a report to the Legislature on the newborn screening process.

A companion bill, SF3138, sponsored by Sen. Ann Lynch (DFL-Rochester), awaits action by the Senate Judiciary Committee.

- C. Green