Data privacy, data property, and data sharing: an interdisciplinary dialogue for post-pandemic transnational research:
The collection and processing of human biological samples and related health data for the purpose of transnational biomedical research is instrumental to contrasting the spread of Covid-19, but it also raises ethical and societal issues. Concerns about the control of data flows show the enduring tension between the individual and collective impact of biomedical research, now exacerbated by the pandemic. This workshop proposal represents an important opportunity to address the complexity of the issues at stake by discussing the potential ethical and legal solutions to data access that would make biomedical research possible and sustainable in a post pandemic future.
This workshop on 19 – 21 June 2023 will adopt an interdisciplinary approach, bringing together scholars from different areas of expertise, such as lawyers, social scientists, epidemiologists, doctors, computer scientists, as well as associations of patients. It will address three main subject areas:
a) Unpacking the idea of data ownership to clarify the main differences between ‘data ownership’ and ‘data control’
b) Achieving a proper balance between data protection and data sharing in the field of transnational biomedical research
c) Advancing the responsible sharing of health-related data to foster a culture of data altruism and data solidarity