Professor Natalie Ram with Professor Leslie Wolf published "Act on a mandate to protect research subjects' privacy" in SCIENCE on December 5, 2024.

In Michigan, a federal judge has held that the state’s newborn screening program violates parents’ constitutional rights by retaining newborn blood spots for research purposes and purportedly turning them over to police for investigative use. Research data related to drug use, chemical exposure, criminal sentencing, and child abuse have been sought for investigation and criminal and civil cases (1). With contested research expanding rapidly to include work on reproductive health care, mental health, and sensitive genetic data (among others), protecting the privacy interests of research participants has become increasingly important. Fortunately, broad swaths of sensitive and identifiable research data are entitled to robust legal protection against nonconsensual disclosure—if only the federal government would implement it. Congress called for the coordination and expansion of Certificates of Confidentiality, a statutory tool that protects identifiable research data from legal process, but its mandate has yet to be realized.