Donor-conceived people and their parents
Rules around releasing donor information
Sally Cheshire CBE, Chair of the Human Fertilisation and Embryology Authority
More people than ever want to find out about their genetic make-up and with our appetite to dive deep into our DNA and ancestry becoming increasingly popular, it’s not surprising that DIY DNA testing kits are on the Christmas list for many this year.
Yet, while the curiosity to find out about one’s family traits and health predispositions is no doubt intriguing, unexpected results may mean that a well-meaning Christmas gift can quickly turn family life and relationships upside down.
Our latest data shows that in the UK more than 3,700 children were born thanks to donated sperm or eggs in 2017 and with more people outside of heterosexual relationships using assisted reproduction to create their families, this number is increasing.
While we encourage parents of donor-conceived children to talk to them about their origins at the earliest opportunity, we know that there are many who choose not to. This can happen more often in families who used a donor before there was an official donor register in the UK from 1991 or who used an anonymous donor before 2005, when donor anonymity was lifted in the UK. Everyone who donated sperm or eggs before 2005 to help create families did so with the expectation that they will always be anonymous.
Just this week, I heard from *Liam, a donor conceived-person who found out only by chance that he was born with the help of a sperm donor. The revelation came as a huge shock to him and many years of questioning his identity followed. The ‘betrayal’ of who he thought were his biological parents cut deep.
Although Liam did not find out about his conception through a DNA matching service, his story is a crucial reminder of how devastatingly confusing and emotional it can be if donor conceived people find out about their true genetic heritage, often without any support.
And with the emerging trend of DIY DNA testing websites allowing anyone to investigate genetic relationships, donors who once thought they would be anonymous forever, could be in for a rude awakening, while donor conceived-people who manage to track down their biological parents could be left in turmoil if the desire for a reunion is not shared. And it’s not just donors or donor-conceived people who might find themselves in this tangled web of family connections. Even distant family members could find themselves involved because once people choose to make their DNA results available on public genealogy websites, they can also compromise those family members who themselves never took part in any DNA tests. Once enough of your relatives have submitted their DNA lineage there is potential for any relative to discover whether they are also a genetic match.
While there can be happy endings, as in the case of Andy Walters who donated sperm as a 19-year old student and was contacted by his biological son through Ancestry.co.uk , this isn’t always the case.
Many donor conceived people want to find out about their biological ‘families’, which is why the law around donor anonymity was changed, however it’s crucial that this is done in a supportive environment to help everyone involved during this highly emotional time.
As the fertility regulator, we hold information on every fertility treatment in the UK since 1991, which means we also hold information on treatments that used donor eggs or sperm.
Anyone who knows or suspects they are donor-conceived can contact us for information about their donors and potential donor-siblings, while receiving dedicated support and counselling to help them through this often highly emotional time. And while the numbers of people who apply to open our register are still small, we know that there is a deep desire for people to find out about their origins. And these numbers will increase as we approach 2023, 18 years since anonymity was lifted and the donor-conceived young people start to reach adulthood.
Donating to someone who wants a family is, quite simply, an extraordinary act of kindness and hugely rewarding, even more so when we can help donors, donor conceived-people and donor-siblings to connect later in life. Like best friends Georgia and Jack from Liverpool who contacted us for donor information and found out they are biological siblings, or 21-year old Robyn who met up with her egg donor Angie after requesting information from our Register.
There’s no question that discoveries about genetic relatives can have a dramatic impact on people and their families, especially in situations where someone has been conceived using donor eggs or sperm and didn’t know. The rising trend of DNA matching services has essentially signalled a clear threat to donor anonymity, even for donors who donated before the change in law. To make new donors aware of the risks around DNA matching services, we recently updated our rule book for clinics, the Code of Practice, which now requires them to talk through the implications of DNA matching services with donors and patients considering using a donor as part of their fertility treatment. We’ve also been in touch with the biggest DNA matching companies to raise concerns about the lack of signposting to support for people who might find out that they are donor-conceived. Some of these companies have already made changes to their website information to advise customers of the potential implications, but there’s still more work to be done.
Christmas is a time for families to come together so with the ever-changing landscape of donation, perhaps it is also the time for former donors to consider voluntarily removing their anonymity. This would mean any children conceived through their donation could contact us and find out about their origins with the support they need, before they get that Christmas gift of a DIY DNA testing kit which gives them rather more than they might have expected.
*names have been changed to protect the person’s identity.
Donor Conception Network - Support for donor-conceived people and their families
The Seed Trust - Impartial advice, support and information to prospective donors, intended parents and surrogates
British Infertility Counselling Association (BICA) - Accredited fertility counselling
BICA Consumer DNA Testing Leaflet
The International Society of Genetic Genealogy (ISOGG) - Extensive information aimed at preparing donors for contact with their donor offspring, including where contact is made following use of DTC DNA testing and matching services
Publication date: 30 November 2020
Review date: 30 November 2022