Surveilling Care, Protecting People: Legal Reforms for the Data-Driven Clinic

This paper proposes several key reforms: refining the legal definitions of pseudonymized and anonymized data, introducing more flexible consent mechanisms for data subjects, enhancing de-identification standards, and strengthening technology-based security safeguards. The paper emphasizes the urgent need to reconcile conflicts and inconsistencies among these laws. For healthcare big data to serve as a trust-based public resource, a regulatory environment that ensures both robust privacy protections and the responsible use of data must be established.