MN House Adds Informed Opt-Out Requirement to Newborn Genetic Screening

St. Paul, Minnesota - Parents should should be able to refuse state genetic testing of their children, says a Minnesota House Committee. The House Ways and Means committee voted yesterday to attach an amendment by Rep. Fran Bradley (R-Rochester) to the House Health and Human Services omnibus bill (HF 437).

"This is a victory for parents and citizens. Genetic testing should always be at the discretion and choice of individuals, not the state," says Twila Brase, president of the Citizens' Council on Health Care.

The Bradley amendment, drafted with the assistance of Reps. Tim Wilkin (R-Eagan) and Jim Abeler (R-Anoka) was the result of concerns raised in testimony by Citizens' Council on Health Care on the original language in the bill.

The original language written by the Minnesota Department of Health (MDH), did not permit parents to object to genetic testing except on the basis of religious tenets and practice. It authorized the commissioner of health to add genetic tests without notice or public comment. And all children with presumptive diagnoses were to be placed on a state registry of congenital and heritable disorders without parent consent.

The amendment requires parents to be given an array of options: participating in the testing, not participating, or participating but having their identifying information and blood specimens destroyed within 24 months of the testing.

Brase remains concerned that parents will not fully understand that state storage of blood specimens, may expose them and their children to genetic research. In 2002, health officials received three requests for access to the DBS of babies. Access was denied because the department has yet to determine whether or how to permit access to the specimens.

Although health officials last year recently received a $75,000 federal grant for development of a 'State Genetics Plan', Minnesota currently has no specific law regarding use or dissemination of infant blood specimens. The health department, which has historically destroyed DBS after 5 years, decided in 1997 to keep them permanently. The MDH reports that the dried blood spots of approximately 350,000 individuals are currently in storage. This figure will increase by approximately 70,000 a year, the state's annual birth rate.

"Genetic and medical researchers view the DNA of babies as a huge untapped resource for genetic data. Despite the potential benefits of genetic testing, parents and citizens must always be given the right to authorize or deny access to the private genetic details of their lives," says Brase.

The Senate HHS omnibus bill, which includes the original provision on newborn genetic testing, does not yet have the parent consent amendment attached.

Media Contact:

Twila Brase, President
Phone: 651-646-8935 (office)