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Known Unknowns: The Pros, Cons and Consequences of Known Donation

21 September 2020
Appeared in BioNews 1064

Donor conception was the focus of the event 'Known Unknowns: The Pros, Cons and Consequences of Known Donation', held online by the Progress Educational Trust (PET), the charity that publishes BioNews, in partnership with the University of Manchester.

Sarah Norcross, director of PET, began by explaining how the introduction of releasing a sperm, egg or embryo donor's identity to the donor-conceived child when they reach 18 (so-called identity release donation), the wide availability of genetic tests, and the rise in known donor arrangements are eroding donor anonymity. Norcross then opened the discussion by asking what level of connection should exist between donor and recipient and donor and donor-conceived child.

The first speaker Dr Petra Nordqvist, researcher and senior lecturer at the University of Manchester, spoke about her team's project Curious Connections which has been exploring the impact of donation on the lives of donors. Using in-depth interviews, Dr Nordqvist discovered that the degree of relationship between donor and recipient varies greatly. It was interesting to learn that although donors do not see themselves as parents, they feel a 'sense of connection', signifying that the relationship carries an 'emotional charge' that needs to be carefully managed. Dr Nordqvist also raised some valid concerns regarding identity release, asking 'how will they [donor-conceived people] make sense of it and how will relationships change?'.

The second speaker, Natasha Fox, gave a moving account of her experience growing up as the daughter of the first person in Scotland to access IVF treatment as a single woman. Fox spoke passionately about the challenges her mother faced as a single parent in the 1990s and how her interest in her family history sharpened over time, along with her curiosity about her donor. It was both fascinating and heart-breaking to hear Fox recall writing letters to her unknown donor, counting down the days to her 18th birthday and meeting her half-sister whom she discovered by taking a DNA test. Fox's resilience also came across as she criticised the media's treatment of donor-conceived people and the Human Fertilisation and Embryology Authority's (HFEA) lack of action and low re-registration rates.

The third speaker Nina Barnsley, director of the Donor Conception Network, continued the discussion by outlining the pros and cons of known donor arrangements. Based on anecdotal evidence, she said the majority of experiences were positive. However, Barnsley noted that difficulties can arise, for example, when the donor wants to take on more of a parental role or the donor-conceived child has stronger opinions later in life – such as wanting more or less contact with the donor or wanting to call the donor dad – 'blurring the lines'. Barnsley emphasised the need to set boundaries and be mindful of our terminology. She concluded by saying 'things are going fine but occasionally a spanner can come into the works.'

The next speaker was Erika Tranfield, the founder and director of Pride Angel, a website that connects donors and co-parents online. Tranfield began by presenting data which showed how the demand for gamete donation has increased over the last ten years, together with a rise in the online fertility industry. She then shared her personal journey of becoming a mother to a donor-conceived child, which gave a more intimate perspective on how the process works, and shed a more positive light on online connection services. Tranfield also balanced this resounding positivity by highlighting some of the hurdles she faced and stressing the importance of understanding intentions and expectations from the outset.

The final speaker of the evening was Natalie Gamble, solicitor at NGA law, which specialises in fertility and family law. Gamble briefly described the spectrum of known donor arrangements and explained how difficulties can arise when roles are poorly defined and expectations are mismatched. She emphasised the complexity and inflexibility of UK law, urging recipients and donors to take more time to understand the law, ensure their expectations are aligned and written agreements are put in place. After a whistle-stop tour of the law, it was encouraging to hear Gamble end on a positive note saying that known donation was 'a good thing' as it offers transparency and an opportunity for a donor-conceived child to have more people in the world who love them.

During the Q&A session, the most popular questions centred on Dr Nordqvist's research, Fox's experience as a donor-conceived person, and navigating complex relationships.

Dr Nordqvist spoke about the lack of consistency in the reasons why relationships break down, the possible tensions between generations, and the importance of using the right language – although there are exceptions, as a rule neither donors nor recipients think it appropriate to refer to donors as parents. Dr Nordqvist also said that some donors prefer to stay anonymous, and that different routes can be equally successful.

Gamble agreed that we should not assume donors want to be involved. She also spoke about the redundancy of the UK's legal framework and recommended donors and recipients seek legal advice early on, as there can be a great deal of emotional vulnerability when relationships break down.

Barnsley echoed this by emphasising the value of good communication, preparation and long-term planning. She also stressed the importance of focusing on the child's needs and allowing them to find their own language. Fox agreed that it's about finding words that 'feel right' and being aware that feelings change.

Norcross concluded that people and families are complicated, and there is a great deal to take forward from this event and discussion regarding pre-planning, communication and terminology.

I would recommend this event to anyone interested in understanding the very real impact donor conception has on people's everyday lives. I was fascinated by Dr Nordqvist's research, the work of Barnsley's organisation and Gamble's legal perspective, which helped build a wider picture of how we navigate connectedness. I was also completely captivated by Fox and Tranfield's moving and thought-provoking stories. As Fox noted in her final thoughts, it's encouraging that events such as this are becoming more common.

PET is grateful to the University of Manchester's Morgan Centre for Research into Everyday Lives, and to the European Sperm Bank, for supporting this event.

Register now for PET's next free-to-attend online event 'An All-Consuming Problem? How to Protect Patients in the Fertility Market', taking place on Thursday 14 January 2021.

Find out more here, and register for your free place here.

Known Unknowns: The Pros, Cons and Consequences of Known Donation
Progress Educational Trust |  16 September 2020
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