DescriptionThe 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, questioning the legal and ethical issues implicated in deciding to be(come) a parent by donor conception under conditions of anonymity, I consider the notion of relational procedural justice, situating the experiences of our participants in a consideration of whether (and how) a reformed regulatory framework might better attend to the needs of both gamete donors and the donor-conceived community. In particular, I consider whether reform of the Human Fertilisation and Embryology Act 1990 with retroactive effect should be on the table. Semi-structured interviews and focus group discussions with donors, donor-conceived people, parents through donor conception and regulators in the field inform the analysis.
|14 Sept 2023
|FACING DISRUPTION. CHALLENGES TO BIOETHICS, HUMAN RIGHTS AND DEMOCRACY
: EACME Annual Conference 2023
|Degree of Recognition
Press/Media: Expert comment
Press/Media: Blogs and social media
Direct-to-consumer genetic testing and the changing landscape of gamete donor conception: key issues for practitioners and stakeholders
Research output: Contribution to journal › Article › peer-review