Court orders new constraints on newborn screening program

by jeeg 17. November 2011 01:37

A state health program that takes blood samples from Minnesota newborns to screen for more than 50 diseases and disorders can continue despite a legal challenge on genetic privacy grounds, the Minnesota Supreme Court ruled today.

But in a ruling that reverses a lower court decision, the court placed new restrictions on the Department of Health's ability to store the blood samples and use them for additional studies.

The department can provide the blood samples to outside researchers only if it receives the specific consent from parents, the court ruled.

The justices also said that lower courts erred in dismissing the original challenge, which was brought by a group of parents, and sent the case back to a district court to determine if the parents deserve legal remedies.

Wednesday's ruling caps an emotional four-year struggle pitting the concerns of privacy activists and concerned parents against a public-health effort designed to track and prevent detectable diseases.

On average, the Minnesota Department of Health blood-screening program tests 73,000 newborns annually and discovers about 100 confirmed disorders. The findings allow for early intervention that can help save lives, according to the Health Department.

The court said the program does not violate the 2006 Genetic Privacy Act as long as it is limited to screening for childhood diseases, reporting those test results, maintaining a registry of positive cases for the purpose of follow-up services and storing those test results as required by federal law.

But in a dividied ruling, the court found that the actual blood samples are considered "genetic information'' under the 2006 state law passed to protect the privacy of all genetic data.

"The (state health) commissioner's power to conduct health studies does not include unlimited authority to use the genetic information obtained from newborns for screening purposes in those (additional) health studies,'' according to the decision. "Use of genetic information for purposes other than the screening of newborn children and for follow-up services requires written informed consent.''

Three justices filed a dissent, arguing that the newborn screening program is not constrained by the genetic privacy law.

Tony Kennedy, Star Tribune

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