The public benefit in cross-border genomic data-sharing for research is supported by international instruments which enable regulated cross-border sharing of personal data. In Australia, privacy legislation permits sharing personal information with recipients in another country subject to compliance with cross-border data-sharing provisions. However, research highlights a heightened risk to individuals’ privacy when genomic data is transferred between countries with non-harmonised privacy protection regimes.
In this presentation I examine what happens to privacy protections afforded genomic data which are shared in international research collaborations. In it, I illustrate how jurisdictional differences between privacy laws applying to genomic data can give rise to privacy risks, and query whether statutory regulation of cross-border data-sharing can adequately ensure that privacy protections afforded the data in the original jurisdiction are maintained. I draw upon Watson’s theory of ‘legal transplants’ and Teubner’s theory of ‘legal irritants’, to understand what occurs when legal rules safeguarding the privacy of genomic data are interpreted and applied in isolation from their original framework, and in a different legal environment. I illustrate how statutory regulation of international data-sharing only imperfectly mitigates privacy risks arising in this scenario, and that some ‘legal irritation’ is likely to occur. However, I propose that understanding differences in the privacy protection regimes of sharing countries can inform steps to lessen the ‘irritation’ effect.
I conclude by suggesting that ‘contextual guidance’ and protocols for improved communication between non-harmonised privacy regimes sharing genomic data, may help preserve originally afforded privacy protections.