A Comparative Review of Data Sharing Regulations and Practices in Four Jurisdictions (Australia, France, United Kingdom, United States)

Abstract

This report compares the legal and organisational differences of four countries – the US, the UK, France and Australia – with regard to genetic and health data sharing initiatives both domestically and internationally. Reviewing statistics on the pace of viral sequence data deposits to international databases such as GISAID, this paper explains why some countries may achieve more complete and quicker health data sharing. Although performance in sharing is more easily measured for viral sequence data due to the challenge in obtaining similar statistics for human genomic data in controlled access, measuring performance remains relevant for host sequence data as well. As such, conclusions are also provided for more sensitive data such as host sequence data or viral sequence data with extensive metadata. For more sensitive information, we noted some legal and structural differences such as stricter formalities or the presence of more than one consortium that could impact the pace at which data is shared. For less sensitive data such as viral sequence data with minimal metadata, our comparison is inconclusive. Interestingly, while all the countries analyzed had very similar legal restrictions and analogous organisational structures, they performed very differently at sharing their genomic and metadata.

Keywords: COVID-19, data-sharing, genomics, public health, policy