The Progress Educational Trust (PET) and the University of Liverpool held a joint public event in London on 19 June 2019, to discuss direct-to-consumer (DTC) genetic testing in relation to donor anonymity.
Sarah Norcross (director of PET) co-chaired the event with Dr Lucy Frith (reader in bioethics and social science at the University of Liverpool). Norcross introduced the discussion, noting that donor conception and genetic testing have been on PET's agenda for more than 20 years. A key development in that time was a change to UK law which came into force in 2005, removing the legal entitlement to anonymity for sperm and egg donors.
Debbie Kennett (genetic genealogist and honorary research associate at University College London) gave the first talk of the evening, setting the scene on genetic testing. Kennett said that she'd attended her first PET event in 2015, and was struck then by the lack of awareness about DTC genetic testing. She described how this awareness has grown over the past four years, with more advertising and wider availability of DNA tests. The rise of genetic testing – which comes with the ability to investigate genetic relationships through online databases (see BioNews 999 and 1000) – is indeed putting an end to donor anonymity, she said.
Kennett used several examples from the media to describe how discoveries about genetic relatives can have a dramatic impact on people and their families, especially in situations where someone has been conceived using donor gametes, or in situations of 'fertility fraud' where the gametes used were not those agreed by the parents (see BioNews 978).
The title of her final slide summed it up memorably, reading: 'DNA = Donor Not Anonymous'. Her key points were that support, counselling and privacy (but not anonymity) should be available for all parties, that the fertility sector should take more responsibility, and that the time has come for a 'new paradigm' of co-parenting that involves both biological and non-biological parents.
The second speaker was Andy Waters, who was a sperm donor in the UK before the law was changed to end anonymity. His succinct talk outlined how he became a sperm donor as a student at the University of Liverpool from 1986-90. Years later, he was subsequently identified and contacted by two donor-conceived people, even though he had not taken a genetic test himself. He described the experience of being contacted by his genetic offspring as 'amazing' and 'life-enriching'.
Waters said that with cheaper and more widely available genetic tests, people are disclosing their genetic information as they once did their photos, creating 'a world where we can no longer hide it [sperm and egg donation]'. He encouraged donors who are willing to be contacted to add their details to the Donor Conceived Register, which enables people conceived through gamete donation in the UK before 1991 to contact one another – and/or contact the relevant donors – voluntarily.
He finished by emphasising the need for honesty and arguing for a rethink of the current UK system, whereby donor-conceived children are not automatically entitled to know that they are donor-conceived – and even if they do know this, they are not entitled to access donor information until they reach the age of 18. Waters suggested that details of donor conception should be added to birth certificates, to help prevent the 'anger, distress and hurt' when people discover through a genetic test that they are donor conceived.
The next speaker was Becky, a donor-conceived person, who shared her personal experience. She told us how her mother revealed that she was donor-conceived when she was 37 years old. On finding out, she described this as a 'trauma, shock... like an earthquake... everything had changed', and said she felt an extraordinary sense of loss.
With a limited number of fertility clinics in the UK in the 1960s, when Becky was born, it wasn't long before she tracked down the relevant clinic as well as other relatives conceived from the same donor sperm. She said she felt 'very excited and elated' to discover her half-siblings, and this made her redefine what family means. It also raised a lot of ethical questions. How do you approach a donor? How do you approach a half-sibling? What do you tell them?
She finished by saying that there are several issues that many donors agree on – that donor conception creates a new kind of kinship, that there should be a shift in the fertility industry with more focus on the needs of the child rather than the parents, and that details of donor conception should be included on birth certificates as 'it's a basic right to know your history'.
The final speaker was Louise Johnson, chief executive of the Victorian Assisted Reproductive Treatment Authority (VARTA), who gave an overview of the work her organisation does to support donor-conceived families in Victoria, Australia (see BioNews 998).
She described how VARTA supports donor-conceived people, parents and donors in finding relatives, requesting information from the central register, and making contact. We were shown a video of one woman, Hayley Smith, describing her emotional journey from learning that she was donor-conceived to discovering she had a half-sister.
Johnson explained how the service provides a more sensitive way to make contact than reaching out directly via a DNA testing site's online database. She ended her talk by observing that DNA websites were booming, and that the law has been too slow to catch up with reality.
The floor was then opened for questions from the audience. One attendee asked how best to approach a newly discovered, or newly identified, genetic relative. The panel agreed that there is no easy way, and Waters advised donor-conceived people to be tactful and donors to 'be brave and take heart'.
Another question concerned the inadequacy of language, and a need to develop new terminology to help navigate increasingly complex ideas of relatedness and family. Many audience members encouraged openness and awareness, arguing for more counselling support and for putting children's interests first.
Once audience member suggested that 'identity release is no more', because the idea that identity can be withheld until it is formally released is becoming less and less realistic. Several panel members agreed that genetic tests are making it easier to find relatives online, and that it might not make sense to wait until a donor-conceived person is 18 years before allowing them to identify the relevant donor.
In all, the conversation could have gone on and on – and is likely to continue at future PET events.
PET is grateful to its partner (the University of Liverpool) and its sponsors (European Sperm Bank and London Women's Clinic) for collaborating on and supporting this event.