Act on a mandate to protect research subjects’ privacy

• Published in: Science (American Association for the Advancement of Science) Vol. 386; no. 6726; pp. 1096 - 1097
• Main Authors: Wolf, Leslie E., Ram, Natalie
• Format: Journal Article
• Language: English
• Published: United States The American Association for the Advancement of Science 06.12.2024
• Subjects: Child Abuse; Child abuse & neglect; Confidentiality - legislation & jurisprudence; Drug abuse; Drug Use; Federal government; Humans; Police; Privacy; Privacy - legislation & jurisprudence; Reproductive health; Research Subjects - legislation & jurisprudence; Screening Tests; United States; United States
• ISSN: 0036-8075; 1095-9203; 1095-9203
• DOI: 10.1126/science.adu2675

Congress called for the protection of data from legal process 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.