[artigo] Data Protection and Ethics Requirements for Multisite Research with Health Data
A Comparative Examination of Legislative Governance Frameworks andthe Role ofData Protection Technologies
Our paper compares legislation on data protection andresearch ethics requirements for health-related dataand particularly personalised medicineacross seven jurisdictions. Personalised medicine can improve both public and individual health by providing targeted preventative and therapeutic healthcare. For these benefits to be realised,doctors, healthcare providers,and researchers must be encouraged to share patient health data between institutions. Data sharing is an integral part of multisite research, and may require transfer across jurisdictional boundaries. However, whilst data protection, privacy, and research ethics laws protect patient confidentiality, safety,and security, they also may act as impediments to multisite research. This effect is exacerbated when transferring data across jurisdictions due to the divergences in data protection and research ethics laws.