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

Posted: 24 Jun 2022

See all articles by Sina Faraji

Sina Faraji

affiliation not provided to SSRN

Hanshi Liu

Mcgill; McGill University - Centre of Genomics and Policy

Aurelie Dauge

McGill University - Centre of Genomics and Policy

Beatrice Kaiser

McGill University - Centre of Genomics and Policy

Palmira Granados Moreno

affiliation not provided to SSRN

Yann Joly

McGill University - Centre for Genomics and Policy

Date Written: April 4, 2022

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

Suggested Citation

Faraji, Sina and Liu, Hanshi and Dauge, Aurelie and Kaiser, Beatrice and Granados Moreno, Palmira and Joly, Yann, A Comparative Review of Data Sharing Regulations and Practices in Four Jurisdictions (Australia, France, United Kingdom, United States) (April 4, 2022). Available at SSRN: https://ssrn.com/abstract=4142536

Sina Faraji

affiliation not provided to SSRN

Hanshi Liu (Contact Author)

Mcgill ( email )

Montreal, Quebec
Canada

McGill University - Centre of Genomics and Policy ( email )

740 Ave Dr Penfield
Montreal, Quebec H3A0G1
Canada

Aurelie Dauge

McGill University - Centre of Genomics and Policy ( email )

740 Ave Dr Penfield
Montreal, Quebec H3A0G1
Canada

Beatrice Kaiser

McGill University - Centre of Genomics and Policy ( email )

740 Ave Dr Penfield
Montreal, Quebec H3A0G1
Canada

Palmira Granados Moreno

affiliation not provided to SSRN

Yann Joly

McGill University - Centre for Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

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