Donor Conception: Who Should Know What and When?

Offering an opportunity to explore the complex and often contentious issues surrounding donor conception, anonymity and future law reforms, the most recent event by PET, 'Donor Conception: Who Should Know What and When', had a line-up of exceptional speakers, who delivered a mix of lived experiences and academic perspectives.

In brief, current UK fertility law states that sperm, egg or embryo donors may remain anonymous until a child resulting from their donation reaches the age of 18. At that point, the donor-conceived child may request information about the donor's identity. Conversely, the donor has no legal entitlement to know the child's identity.

In recent years it has become increasingly easy to circumvent these rules with the introduction of direct-to-consumer genetic testing. These tests allow donors, donor-conceived people, and donor-conceived genetic siblings to identify one another before the relevant donor-conceived person reaches the age of 18 without any prior consent.

In response, the UK government is considering revising the fertility law, and the Human Fertilisation and Embryology Authority (HFEA) is now scrutinising four new legal models for regulating donor conception.

These new legal models were at the centre of the event, chaired by Sarah Norcross, director of PET, who began by summarising the proposed models and asking the speakers to explore which one might work best or whether a different approach should be considered.

The four new legal models proposed by the HFEA are:

• 'Status quo plus' – keep the law as it is now, except with an added legal requirement for clinics to inform donors and recipients of the possibility that genetic testing might lead to identifiability at any time.
• 'Early identification by consent' – create a new system whereby donors can, if they wish, opt formally to become identifiable before the donor-conceived child turns 18.
• 'Remove anonymity' – create a new system whereby donors must be mandatorily identifiable to the recipients of their donation from an early stage (upon birth of the donor-conceived child, or perhaps even earlier).
• 'Double track' – create a new system whereby donors choose either to become identifiable to the donor-conceived child when that child turns 18, or to be identifiable to the recipients of their donation from an early stage.

Dorothy Byrne started the discussion by sharing her personal experiences as a parent to a donor-conceived person born before changes to the fertility law in 2005. Byrne's account of being persuaded to use an anonymous donor and later regretting the decision reminds us how challenging it is to make such choices at a moment of extreme vulnerability. She spoke passionately about her daughter's need to 'know who she is,' repeatedly emphasising that it's not necessarily about her daughter wanting to build a relationship with her donor, but understanding her complete identity. Byrne gave a powerful talk, but I would have liked to hear more about her opinions on which models she favoured, if any.

We then heard from Kevin Moore, a donor-conceived person and sperm donor. It was fascinating to hear about his life, the events that led him to discover the identity of his donor and half-siblings, and the role of direct-to-consumer tests. Moore also reflected on the different models and ended by emphasising the need for openness, choice and the acknowledgment of the impact of genetic tests. While I was happy to hear that Moore had a positive experience, it did mean that, for this event, the stories where that's not always the case were overlooked.

Nina Barnsley, director of the Donor Conception Network, spoke about boundaries and belonging while focusing on the double-track model. With a few simple illustrations, Barnsley demonstrated the complexity of all the connections that make up an extended family and explained where the donor might fit based on who belongs where and when. She also discussed the potential benefits of the double-track model and balanced this with things to consider. Her closing remark focused on managing expectations and striking a balance, which also echoed the views of the previous speakers.

The penultimate speaker, developmental psychologist Dr Jo Lysons from the University of Cambridge's Centre for Family Research, introduced the findings of her research exploring the perspectives of children conceived via egg donation. Dr Lysons' use of data alongside quotes gave a deep insight into the parents' perspective. The one result that stood out to me was that 28 percent of mothers and 32 percent of fathers did not understand that their egg donor would be identifiable to their child in the future. It was also intriguing to hear the wide-ranging feelings on identity release, with some perceiving it as a threat and others viewing it as an opportunity.

Guido Pennings, professor of Ethics and Bioethics and director of the Bioethics Institute Ghent, Belgium gave the most provocative presentation of the evening. The Q&A chat went into an instant frenzy when he said that no argument could be made for the right to know one's genetic origins.

Professor Pennings added that the scientific evidence shows that having information on genetic origin is not necessary to have a normal life and function well. He also spoke about the abolition of donor anonymity having little to do with the child's welfare and more to do with a battle between bionormative (family is based on genetic relationships) and the socionormative (family based on psychological relationships) ideologies. He explained that introducing the double track model would bring the genetic parent back into the family, giving more value to the bionormative ideology despite a lack of evidence that such a change would be in the best interest of the donor-conceived child.

Professor Pennings' views, whether right or wrong, challenged the audience, which is precisely what a constructive debate needs.

Norcross kicked off the Q&A with a question on whether the HFEA has consulted with the adult donor-conceived community regarding the potential law changes. An audience member from the HFEA said they are currently preparing a consultation. Dr Lysons and Moore added that getting a range of views from donor-conceived people of different ages and backgrounds is essential.

The question that divided the speakers most was about the double track model and whether it would lead to relationships that the donor-conceived child may be too young to consent to or may not want. Barnsley focused on the parents doing what is right for them, while Dr Lysons said we need to ask what donor-conceived people want. Professor Pennings came with a different perspective, saying that we already have data, and we know opinions are divided, so it's not necessarily about collecting more data but figuring out what to do with it.

The following question focused on the risks of a fully open donation model, potential legal disputes and what support is required to help prepare parents and donors to manage relations while the children are young. Barnsley and Dr Lysons agreed that counselling and peer support from initial consultation to post-conception would be beneficial. Moore followed up by outlining the benefits of mediation and having a facilitator. A later question followed up on this, asking who was responsible for providing the support. Barnsley talked about the importance of the charity sector and said that the responsibility should not necessarily fall on the UK taxpayer but on the fertility clinics.

The Q&A ended with a final statement from a single woman approaching her first round of IVF using a sperm donor. She talked about accepting upfront that her family will inevitably be subject to uncertainty and potential disruption by taking this path. She then noted that all families must deal with challenges and work hard to maintain good relations, whatever the cause. Barnsley added that preserving the integrity of the family separate from the donor prevents confusion for the child.

Dr Lysons ended the discussion by saying that we should learn lessons from adoption data, which suggests that communication and openness in an age-appropriate way are crucial to managing boundaries and achieving better outcomes.

Overall, this was a well-handled, fascinating event, and further demonstrated that discussions and education on the issues surrounding donor conception are much needed to forge decisions on any future law reform.

PET is grateful to Merck for supporting this event.