Widening the debate about direct-to-consumer genetic testing and donor conception

Last month, June 2022, the Human Fertilisation and Embryology Authority's (HFEA) chief executive told the Guardian newspaper that it is considering whether to recommend removing the age restrictions (currently 18) at which donor-conceived people can access identifying information about their donor. These recommendations are part of a wider review of the Human Fertilisation and Embryology (HFE) Act. The interview stated that such moves were being considered as a consequence of the rise of direct-to-consumer genetic testing (see BioNews 1145), through websites such as 23andme or AncestryDNA, which mean that donor anonymity can no longer be guaranteed.

I welcome this announcement along with the rest of the team at the ConnecteDNA project, which includes collaborators from a number of UK universities. Together we are exploring the social, ethical and legal implications of direct-to-consumer genetic testing for donor conception. We were also pleased to read of the planned public consultation and the wider review of the HFE Act. It is vital that the laws surrounding donor conception take account of the changing social worlds within which they operate. However, our research suggests that the age at which donor-conceived people can access information about their conception is just one of many questions raised by the rapid expansion of direct-to-consumer genetic testing.

Our research is ongoing but, to date, we have interviewed 50 people involved in donor conception who have been affected by the increased availability and use of these tests. These include a number of donor-conceived people who discovered they were donor conceived after taking a commercial DNA test. Such discoveries can have significant impact on relationships and mental health for these individuals and their families.

Participants in the research also include donor-conceived people who have used direct-to-consumer genetic testing to trace people to whom they are genetically related through donor conception, as well as those who have tried to do so without success. We have spoken to donors who have used this kind of genetic testing to make themselves available to people conceived from their donations and also donors who have not taken a direct-to-consumer genetic test themselves but have nevertheless been traced by their donor offspring indirectly, via (sometimes quite distant) relatives who have used one. Parents of donor-conceived children have also taken part in interviews and shared their views on whether, when and why they would consider enabling their own children to be registered on a consumer genetic testing database, such as that held by websites 23andme and AncestryDNA .

Some parents are considering this to build links with donor-related families or to provide their children with more information about their donor, during their childhood. In addition, we have spoken to relatives of donors for whom being contacted by a donor-conceived person can also have a significant emotional impact and raise questions about their own relationships, whether they are themselves genetically related to the donor-conceived person (for example, donors' own children) or not (ie, donors' partners or step-children).

Direct-to-consumer genetic testing does therefore raise questions about whether, going forward, we should lower the age at which donor-conceived people (or their parents) can formally access identifying information about the donor because, as our research shows, there is an interest in this information from parents (on behalf of their children) and the expansion of direct-to-consumer testing could make tracing donors easier outside of 'official' systems, such as approaching the HFEA register. Arguably, this is an ethical debate we should be having regardless of the technological context, given calls from donor-conceived people for such reforms  However, our research also points to other questions which we hope any future review of the law surrounding this subject will also consider:

• Direct-to-consumer genetic testing can reveal evidence of donor conception where the donor is formally anonymous, including where there are no longer any official records remaining of their donation. Should any changes to donor anonymity apply retrospectively? In particular, where the HFEA holds records of their donor, should donor-conceived people born between 1992-2004 in the UK also be able to access identifying information?
• Direct-to-consumer genetic testing can reveal evidence of donor conception, decades after a child is born. What support is needed for donor-conceived people, donors and their families in the context of sudden or shock disclosures of donor conception (as was outlined in a paper in Human Fertility in 2018), or to support parents in telling their (young or adult) children about their conception? Who should fund this support?
• Donors and parents may not be fully aware of the implications of direct-to-consumer genetic testing for themselves and their families. What steps should be taken to inform past and future donors and parents through donor conception of the implications of direct-to-consumer genetic testing? For example, should past donors and parents be contacted individually and offered support with talking to their own families? Do we need a national publicity campaign?
• Direct-to-consumer genetic testing enables connections beyond donors and donor-conceived people, including the children, siblings and parents of donors and donor-conceived people, to identify one another. Should 'official' systems also allow for such connections to be made? In particular, should the children of donors be able to find out about their parent's donations or connect with those people born as a result?
• Direct-to-consumer genetic testing enables connections to be made after the deaths of the parents and donors directly involved in a donor conception. In such contexts, unexpected genetic matches (eg, between the children of donors and a donor-conceived person) could be interpreted as evidence of infidelities or adoptions. What role could or should 'official' information systems play in these post-mortem situations?

While, in considering these questions, it is important to take account of the shifting technological context, we should not be led entirely by the technology. Instead, we hope that the expansion of direct-to-consumer genetic testing can prompt a broader discussion about the principles which should guide both the organisation and the regulation of donor conception. In this way we can consider and account for the range of meanings that reproductive and genetic connections can have in people's lives.