Minnesota gets high marks for infant screening, but system irks some

Little Beckett Evan Koons was all of one day old when the KARE 11 news crew stopped by his mother's room Friday at United Hospital in Saint Paul. And yet, because he was born in Minnesota, the nine-pound boy is already being screened for 54 treatable diseases.

By law his parents, Brad and Karla Koons, could've opted out of that testing but didn't.

"I'd rather know now," Brad told KARE 11, "So we can get some early detection, get some early treatment, and make sure he gets the best health care possible."

Minnesota's commitment to newborn screening is getting high marks in the disease prevention community. Friday afternoon Governor Tim Pawlenty accepted a national award from the March of Dimes for Minnesota's efforts to identify conditions in infants.

According to the March of Dimes, Minnesota's the only state that routinely tests babies for all treatable metabolic and functional disorders the American Academy of Pediatrics recommends checking, including cystic fibrosis and PKU.

"Obviously I'm accepting this on behalf of the state of Minnesota broadly," the Governor said as he held the March of Dimes plaque.

"There's decades worth of work that has gone into this beyond any one governor."

Several sets of grateful parents were on hand at the Capitol, including State Representative Paul Thissen of Minneapolis. His son Evan's newborn screening revealed he had congenital adrenal hyperplasia.

"That test was added to the state's list the year he was born," Thissen told KARE 11, "The timing couldn't have been better for him."

The condition limit's the body's ability to produce certain hormones and can cause an early onset of puberty in boys, or male attributes in girls. It's now being treated with small doses of the medication cortisone.

Parent Laura Godrey also thanked the state for it's aggressive screening program. Her son Keaton's hearing loss was detected at birth, by routine tests.

"I'm just so grateful that he was diagnosed in the hospital because I don't even imagine where he would be now," Godfrey told reporters.

Godfrey, who has since become an audiologist herself, said the early diagnosis gave her family a head start in dealing with potential language issues.

"We got to start the speech from the beginning, and all of the learning how to listen to sounds, because it's not the same with a hearing aid."

And medical privacy advocates are pushing for changes in the law, to limit the Department of Health's ability to collect and store the data.

"A lot of parents would be happy to have their children genetically tested," Twila Brase of the Citizens Council on Health Care told KARE 11.

"But they might not be happy to know that the State is doing it and the State has the data, and essentially the data becomes government property."

Brase, a registered nurse, issued a news release calling the March of Dimes award a "political ploy" and referring the the Department of Health's database of infant test results as "baby DNA warehouse."

She asserts the screening should not be automatic but done instead on an opt-in basis.

"If it's the hospital that's doing it and it gets on their medical record that's fine and dandy," Brase remarked, "But it's the fact that the State's doing it, it becomes government property."

The March of Dimes has consistently opposed changing Minnesota's testing protocal to an opt-in system, out of concern many children's congenital conditions would go undiagnosed until it's too late to treat them.

Brase argues most new parent don't know they even have the right to refuse.

"Because the testing happens so quickly and in the midst of the hub bub of birth and delivery, often the nurse just comes and grabs the baby."

The Health Department uses the data to track childhood disease trends in the state, and for research into genetic disorders and their causes.

Governor Pawlenty told reporters he's confident the state's protecting the privacy of those babies and their parents. He has, however, instructed the health department to make the process more "user friendly" for new parents who may want to opt out of screening.

In the case of Beckett Evan Koons his parents knew he'd be tested for a long list of maladies. During their prenatal classes at United Hospital they were given a Health Department pamphlet fully explaining the screening and the parent's right to refuse.

"It had the entire list on there," Brad recalled.

And he said he and Karla didn't mind the notion of the state saving the data and using it for research.

"I think having the data through the state really helps out as far as public health issues," Brad said, "Figuring out what's happening in the state with different diseases."

So far their son's in perfect health, even if he's not exactly what his three-year-old big sister expected.

"She was looking forward to a little sister, but she's happy with a little brother."

By John Croman, KARE 11 News

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