Parents Ask U.S. Supreme Court to Protect Newborn Genetic Privacy and Enforce Constitutional Limits

Acting to protect their children’s most intimate medical and genetic information, four parents, with the help of Outside Legal Counsel, petitioned the Supreme Court of the United States to ask the justices to review a sweeping appellate decision deriving from Michigan's Newborn Screening Program that permits the indefinite retention and use of newborns’ blood spots and genetic data without informed parental consent. 

The case centers on a simple premise: parents (and not government officials) have the right to decide what happens to their children’s private genetic and medical data once a medical test is complete. 

When a child is born in Michigan, state law requires that heel-prick test be performed shortly after birth to help identify rare but serious conditions. For decades, Michigan retained leftover blood spots and permanently stored the genetic and medical data derived from them without meaningful consent of parents. Those materials were then made available for secondary purposes unrelated to immediate medical care, including research and, in some cases, law-enforcement uses.

In 2018, several sets of parents filed suit on behalf of their children, asserting that indefinite, nonconsensual retention of their children’s blood and genetic data violated the Fourth Amendment and parents’ fundamental rights to direct their children’s medical care.

After years of litigation and a full bench trial, a federal district court agreed. It ruled that once newborn screening is complete, continued retention and use of blood spots and genetic data without informed parental consent is unconstitutional. The federal court entered a narrow but practical injunction: unless parents affirmatively consented, the State had to return or destroy the samples and data after one year.

State officials complied by returning the blood spots. At that point, the dispute over physical samples was over.

Despite the government's compliance with the court order, the court of appeals proceeded to decide the merits of the government's appeal anyway. That decision approved Michigan's program of allowing indefinite retention of newborn genetic data without informed parental consent.

The parents’ petition asks the Supreme Court to address two urgent questions:

Parental Rights and Jurisdiction. Whether courts may issue binding constitutional rulings after a case becomes moot, contrary to Article III’s limits and long-standing Supreme Court precedent requiring vacatur in such circumstances.

Parental Consent and Genetic Privacy. Whether the Fourth Amendment allows the government to indefinitely retain and use a child’s genetic and medical data—compelled at birth—without meaningful, informed parental consent once the medical purpose has ended.

Nearly every parent in America encounters newborn screening within hours of a child’s birth—often at the most vulnerable moment of parenthood. The question presented is not abstract: whether parents truly have a say in how their child’s genetic blueprint is stored, accessed, and used for decades to come.

Advances in DNA analysis mean a single blood spot can reveal a lifetime of deeply personal information—health risks, family relationships, and biological traits. Without clear constitutional limits, parents risk losing control over their children’s most sensitive data simply because it was collected at birth for medical screening.

This case has been litigated for more than seven years, spanning discovery, summary judgment, a five-day bench trial, a permanent injunction, and appellate review. Parents now seek Supreme Court guidance to ensure that constitutional protections keep pace with medical technology—and that courts respect jurisdictional limits when families have already secured relief.

The parents are represented by Philip L. Ellison of Outside Legal Counsel PLC. More on the background of the case can be reviewed at www.StolenBlood.com.