Legal privacy protections of shared genomic data in international research collaborations – ‘transplants’ or ‘irritants’?
Minna Paltiel1, HeLEX, Melbourne Law School, University of Melbourne Carlton 1HeLEX, Melbourne Law School, University of Melbourne, Carlton, Victoria, Australia
Abstract
The public benefit in cross-border genomic data sharing for research purposes is supported by international instruments such as the Council of Europe Convention 108 and by the OECD Privacy Guidelines, which enable regulated cross-border sharing of personal data. However, research highlights the heightened risk to individuals’ privacy when genomic data is transferred between countries with non-harmonised privacy protection regimes.
My research investigates what happens to statutory privacy protections provided to genomic data in two non-harmonised jurisdictions, Australia and Israel, when genomic data is shared between them for research. Both countries’ privacy legislation permits personal data to be transferred or accessed by a recipient in another country, subject to compliance with provisions regulating cross-border sharing of personal data.
In this presentation I query whether statutory regulation of cross-border data sharing in each country adequately ensures that privacy protections afforded genomic data in the original jurisdiction are maintained when the data are shared. Borrowing from Alan Watson’s concept of ‘legal transplants’ and Gunther Teubner’s related idea of ‘legal irritants’, I use adapted versions of these theories to understand what occurs when legal rules safeguarding the privacy of genomic data are applied or interpreted in a divergent legal system. I illustrate how regulation of international data sharing only imperfectly mitigates privacy risks arising in this scenario, and that some ‘legal irritation’ occurs. However, I propose that ‘contextual guidance’ and protocols for improved communication between divergent privacy protection regimes, may lessen the ‘irritation’ effect, and better preserve domestically afforded privacy protections.
Biography
Bio to come