Privacy law, data sharing policies, and medical data: A comparative perspective

Abstract

The sharing and linking of medical data across borders is now a key enabler of new medical discoveries. Data are no longer simply collected and used at a single physical site, such as a laboratory or a research institute. Instead, communication flows between research teams within and across national borders bring together the necessary data and expertise to clarify previously unknown disease aetiologies. Integration of medical data and secure health records systems now allows clinicians to develop early treatment strategies tailored to a specific patient. As policymakers, patient advocacy groups, and biomedical researchers gravitate toward recognizing the benefits of global data sharing, they may be challenged by regulatory systems that were developed when the norm was using and sharing medical data only within a single jurisdiction. This chapter describes and compares key data privacy legal frameworks (Canada, US, UK, EU, Council of Europe, OECD) and discusses data sharing policies adopted by major biomedical research funding organisations (the NIH, Canadian Institutes of Health Research, Genome Canada, Wellcome Trust) in the context of their impact on medical data privacy. In so doing, the chapter explains not only the content, significance, and practical usefulness of these laws, regulations, and policies as they relate to medical data, but also identifies lingering barriers to global data sharing and suggests ways to overcome them while maintaining robust data privacy protection.