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Between a Rock and a Hard Place: Implementing the Newborn Screening Court Ruling

posted on Tue, Feb 21 2012 2:04 pm by Jill Krueger

Newborn Screening

One of the surprising ways that legal education and popular media are alike is in how they treat lawsuits. In both contexts, we tend to treat a court decision as the end of the story. But often, it is not.

Back in November, our Network Report included a summary of the decision in Bearder v. Minnesota. In that case, the Minnesota Supreme court held that the Minnesota Department of Health (MDH) is authorized to administer newborn screening by testing blood samples for heritable and congenital disorders. The court also held that MDH could record and report test results, as well as maintain a registry of positive cases for follow-up services and store test results as required by federal law. However, the court held that MDH was required to obtain written informed consent for any other use, storage or dissemination of the blood samples. The Minnesota Supreme Court then sent the case back to the district court for a hearing on the remedy due to the plaintiffs, if any.

MDH had opposed this narrow reading of Minnesota’s law governing treatment of genetic information held by government entities, including the court’s conclusion that the blood specimens themselves are genetic information. Nonetheless, once the court had ruled, the Department’s duty was to uphold and enforce the law.

In the months following the Bearder decision, two additional lawsuits, Skaja and Anderson, were filed by parents seeking damages based upon MDH’s administration of the newborn screening program previous to the Bearder decision. Thus, MDH found itself “between a rock and a hard place,” as it stated in court pleadings. On one hand, MDH understood the court’s order in Bearder to require it to destroy, rather than store, dried blood spots once newborn screening was completed. On the other hand, the attorneys who had brought the Skaja and Andersonlawsuits objected to the potential for spoliation of evidence in their cases if the blood spots were destroyed.

As a result, MDH filed a motion for an Emergency Protective Order in Hennepin County District Court, seeking approval for a schedule under which it would destroy the blood spots. Based upon an internal review of its procedures, MDH proposed destroying the dried bloodspots after 71 days. The Hennepin County District Court granted the Department’s request, but MDH was not celebrating.

Instead, MDH issued a scathing press release, quoting Health Commissioner Dr. Ed Ehlinger decrying the destruction of a valuable public health resource. Ehlinger said, “While we are aware that destroying newborn screening blood spots after 71 days will compromise our ability to assure the quality and accuracy of the newborn screening program, we believe it is necessary to take this step in order to comply with the Supreme Court’s decision in the Bearder case.” The news release went on to indicate the Department was planning to approach the state legislature to clarify the statutory scheme and correct problems.

Meanwhile, stakeholders that were not parties to the litigation in Bearder, Skaja and Anderson are poised to weigh in. For example, the Minnesota Chapter of the American Academy of Pediatrics  will hold its Pediatricians’ Day at the Capitol on February 21. Newborn screening will surely be a topic raised by the pediatricians with Commissioner Ehlinger and their legislators.

Even after a supreme court ruling, outcomes will likely be improved if public health officials and their attorneys continue to work closely together and if public health departments engage in open dialogue with health care providers and advocates. Working together, we can strive for an appropriate balance between carrying out our duty to see that laws are faithfully executed and acting on our public health expertise and judgment to seek improvements to laws.

Sometimes a court ruling is just another beginning...

Update: Effective August 1, 2014, the Minnesota legislature amended Section 144.125 of Minnesota Statutes to provide for storage and permissible uses of dried blood spots with and without consent. Terms for storage of blood spots collected before August 1, 2014, and on or after August 1, 2014 are described on the Minnesota Department of Health's website.

Jill Krueger

This information was developed by Jill Krueger, senior attorney for the Network for Public Health Law – National Coordinating Center at the Public Health Law Center at William Mitchell College of Law.

The Network for Public Health Law provides information and technical assistance on issues related to public health. The legal information and assistance provided in this document does not constitute legal advice or legal representation. For legal advice, readers should consult a lawyer in their state.

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