Yes, No, Maybe? Legal & Ethical Considerations for Informed Consent in Data Sharing and Integration

Report by Deja Kemp, Amy Hawn Nelson, & Della Jenkins: “Data sharing and integration are increasingly commonplace at every level of government, as cross-program and cross-sector data provide valuable insights to inform resource allocation, guide program implementation, and evaluate policies. Data sharing, while routine, is not without risks, and clear legal frameworks for data sharing are essential to mitigate those risks, protect privacy, and guide responsible data use. In some cases, federal privacy laws offer clear consent requirements and outline explicit exceptions where consent is not required to share data. In other cases, the law is unclear or silent regarding whether consent is needed for data sharing. Importantly, consent can present both ethical and logistical challenges, particularly when integrating cross-sector data. This brief will frame out key concepts related to consent; explore major federal laws governing the sharing of administrative data, including individually identifiable information; and examine important ethical implications of consent, particularly in cases when the law is silent or unclear. Finally, this brief will outline the foundational role of strong governance and consent frameworks in ensuring ethical data use and offer technical alternatives to consent that may be appropriate for certain data uses….(More)”.