Fast evolving data-intensive research and the booming data-driven economy have profoundly affected the traditional regimes of both privacy protection and government transparency. In particular, the sharing and secondary use of personal data are becoming prominent in biomedical research, health services, and public governance, along with debates over its desirability and compatibility with existing legal and ethical standards which are often in tension.
This workshop will examine the seemingly conflicting needs of data protection and open data (or data sharing) in different contexts of research and regulation that form parts of the new data landscape. It will highlight the changes in the diverse and often competing interests that underlie privacy and transparency, including such as human health promotion, public safety, personal dignity, and democratic accountability. By bringing scholars of health law, genomic studies, medical ethics, privacy law, and government transparency, etc., the workshop seeks to provide critiques of the concepts, principles or institutions of data control, especially those in Canada, UK, EU (concerning the General Data Protection Regulation), Taiwan, and China. It will also explore alternative ways to ease the complicated tension between privacy concerns and transparency needs.
This workshop is a joint effort of researchers from HKU Centre for Medical Ethics and Law, the McGill University Centre for Genomics and Policy, and the University of Cambridge Centre for Law, Medicine and Life Sciences. Dr David Erdos is the key organiser for LML.