FHT guest lecture: Cross border transfer of personal health data - Legal, ethical and technical challenges & solutions

About the lecture

Health and social welfare data sharing for health data science research has the potential to significantly improve health outcomes, both at an individual and a collective level. In addition, health research has been characterized by a shift from intrainstitutional research towards collaborations across institutions or between jurisdictions on a national or international level. Despite the potential benefits of this shift in the research paradigm, there are still significant challenges associated with data sharing. The volume of data collected from patients, particularly sensitive data, increases the potential for privacy harms in the event of a data breach. Conversely, inconsistencies in privacy terms used across jurisdictions may impede the seamless transfer of health and social welfare data. Likewise, a lack of technical data standards across research sites can also act as a barrier to data sharing.

This lecture will explore the challenges associated with cross-border transfers of health and social welfare, including transfers within countries and across jurisdictions. Specifically, this lecture will consider the competing legal and ethical imperatives associated with data sharing, as well as how these are exacerbated when considering cross-border transfers of data. This lecture will then consider other potential strategies that might be used to facilitate data sharing in a privacy conscious manner. These include contractual and organizational strategies, as well as technical strategies such as advanced privacy enhancing technologies.

About James Scheibner

external pageJames Scheibnercall_made is a Lecturer in Law at the College of Business, Government and Law at Flinders University in South Australia. James is a legal academic specialising in data privacy and intellectual property, as well as health and information technology law. Prior to arriving at Flinders University, James completed both his undergraduate qualifications in law and computer science and his PhD at the University of Tasmania. James then completed a two-year postdoctoral research fellowship at the Health Ethics and Policy Laboratory, Department of Health Sciences and Technology at ETH Zurich. During this fellowship, James also worked with the Laboratory for Data Security, School of Computer and Communication Sciences at EPFL Lausanne on the use of privacy enhancing technologies.

Professor Effy Vayena, Professor of Bioethics, ETH Zürich; Principal Investigator, Future Health Technologies programme, Campus for Research Excellence and Technological Enterprise (CREATE), Singapore-ETH Centre, Singapore

Associate Professor Bernadette Richards, Associate Professor of Ethics and Professionalism, Queensland Medical School
 

References made:

• Scheibner J, Raisaro J, Troncoso-Pastoriza J, Ienca M, Fellay J, Vayena E, Hubaux J Revolutionizing Medical Data Sharing Using Advanced Privacy-Enhancing Technologies: Technical, Legal, and Ethical Synthesis J Med Internet Res 2021;23(2):e25120 URL: https://www.jmir.org/2021/2/e25120 DOI: 10.2196/25120
  
• Scheibner J, Ienca M, Kechagia S, Troncoso-Pastoriza JR, Raisaro JL, Hubaux J-P, Fellay J, Vayena E. Data protection and ethics requirements for multisite research with health data: a comparative examination of legislative governance frameworks and the role of data protection technologies. J Law Biosci Oxford Academic; 2020 Jul 25;7(1). doi: 10.1093/jlb/lsaa010
• Richards B, Scheibner J. Health technology and big data: social licence, trust and the law. Journal of Law and Medicine Lawbook; 2022 Jun 30;29(2):388–399.