Donor conception, transformational technology and relational data: rupturing individualistic regulatory paradigms

This paper uses the intersection of donor conception and direct-to-consumer genetic testing as a case study to illuminate the inadequacy of the prevailing UK and EU data protection regimes. Highlighting the inherently relational nature of genetic data, it problematises the atomistic approach to data and associated dyadic consent models which underpin current regulatory approaches to data protection. To do so, the paper draws upon the concept of ‘rupture’ as a tool both to think through the impact of direct-to-consumer genetic testing upon the informational and regulatory landscape surrounding donor conception, and to emphasise the dynamic opportunity that this moment offers to reimagine regulatory approaches to data protection.