Health Dept. wants to add gestational research to its birth defects program

State health officials believe an uptick in stillborn babies might be linked to the Zika virus, but because they don’t study birth defects during pregnancies, they can’t confirm that assertion.

Rep. Debra Kiel (R-Crookston) sponsors HF3689, as amended, which would add birth defects during pregnancy – whether resulting in fetal deaths, defined in statute as a fetus 20 weeks along or more, or live births – to the Department of Health’s birth defect information system. Additionally, the bill would give parents or legal guardians an opportunity to opt out from the state collecting their data.

Rep. Debra Kiel

Approved by the House Health and Human Services Reform Committee earlier this month, the House Civil Law and Data Practices Policy Committee on Thursday approved the bill, sending it to the House Floor. A companion, SF2662, sponsored by Sen. Jim Abeler (R-Anoka), awaits action by the full Senate.

Currently, the department collects information on approximately 2,000 Minnesota children born with defects ranging from cardiovascular to chromosomal, ears and eyes to gastrointestinal and orofacial. But they don’t measure the impact of those defects before the children are born.

“We don’t really have a complete picture,” said Barbara Frohnert, the Health Department’s birth defects program supervisor.

Between 2015 and 2016, the department reported a 7.7 percent jump in fetal deaths, from 390 statewide to 420. Frohnert told lawmakers on Thursday that Zika virus is “linked to an increase” in stillborn babies.

“Zika really brought this to a head,” she said.

While the bill passed on a voice vote, Rep. Peggy Scott (R-Andover), the committee chair, and Rep. Eric Lucero (R-Dayton) expressed concern about the assumption of data collection. Scott suggested changing the bill to allow parents to opt-in to have their data collected, rather than the current opt-out provision, which only notifies families about the data collection.

In response to Scott, Rep. Raymond Dehn (DFL-Mpls) said, “I think we’re going a little bit too far” in attempting to shift the burden of information-sharing.