A socio-legal perspective on experiences of donor conception and direct-to-consumer genetic testing: what is the role of law?

Description

The ConnecteDNA research project is focused on donor conception and direct-to-consumer genetic testing (DTCGT). Our qualitative interviews and stakeholder workshop discussions have explored, amongst other things, participants’ views of the regulatory framework within which assisted conception sits, focusing, in particular, on access by donor conceived people to their donor’s identifying information. For many donor-conceived people there is no legal route to that information – it is only available to those born after April, 2005 (although information about anonymous donors has been collected in the UK since 2001). We have also explored how donor-conceived people use DTCGT to circumvent the regulatory framework and uncover information about their donor and other genetic relatives, including ‘donor siblings’. They have described various challenges associated with the use of DTCGT for that purpose, including dilemmas associated with sharing children’s DNA online. Interviews and stakeholder workshops have explored what participants consider to be the role of law, and how they think law reform should attend to the difficulties for the donor-conceived community in understanding their genetic identity.

In this presentation, I situate the views and experiences of our interview and stakeholder workshop participants in a broadly-drawn socio-legal discussion. I consider, in particular, whether (and how) a reformed regulatory framework might better attend to the needs of both gamete donors and the donor-conceived community. Looking back to historic reflections about the harmful potential of secrecy in the context of adoption law (the Tomlin Committee in 1925 and the Hurst Committee in 1953), I consider whether reform of the Human Fertilisation and Embryology Act 1990 with retroactive effect should be on the table.

Period	29 Sept 2023
Event title	Association of Reproductive & Clinical Scientists Symposium 2023
Event type	Conference
Location	Birmingham, United KingdomShow on map
Degree of Recognition	National