Minn. Lawmakers Reconsider Newborn Screening Test for Rare Disorders

Created: 03/06/2014 10:24 PM KSTP.com By: Beth McDonough

A familiar fight over newborn screening returned to the State Capitol.

This time, it's doctors on the offense. They, along with researchers and non-profits, are pushing to repeal a law just two years old.

That law requires the Minnesota Department of Health to destroy blood tests run on newborns, rather than store and use the results for research.

However, members of the house and senate are reconsidering that, and allowing the state to keep a baby's blood test, indefinitely.  It's raising all sorts of concerns about privacy, public health and a parent's rights.

Korissa Olson of Brooklyn Park believes the state should repeal the law. Her 5-year-old son Everett was born with a potentially deadly disorder and she said she wouldn't have known about it without the newborn screening test.

"I think it's very important those blood spots are saved and stored and restore the program to what it used to be, it's a wonderful public health program that works," Olson said.

The revised proposal would still allow parents to opt out of the test altogether. But with consent, a baby's blood sample would be stored and the genetic data from it saved and used for research.

That doesn't sit well with the Citizen's Council for Health Reform. "These are newborn citizens and their DNA is going to become government property and that means the government will be able to do whatever they want," said Twila Brase, a patient advocate and co-founder of Citizens' Council for Health Freedom.

The Minnesota Department of Health oversees the testing of roughly 70,000 babies a year, and says 150 are diagnosed with rare, but treatable diseases. "Do we continue to do that research, do we continue to maximize newborn screening and process new things, we're trying to find out why things happen to children," said Jim Koppel, the Deputy Commissioner for the Minnesota Department of Health. 

The state tests for about 50 disorders.

A bill passed house and senate committees this week. Senator John Marty told KSTP there are still more meetings, debates and votes ahead before this sees the Governor's desk.

Just two months ago, the Minnesota Department of Health agreed to destroy one million blood samples in storage.  That's because of a privacy rights lawsuit filed by 20 Minnesota families.