The fertility watchdog is considering whether to recommend scrapping anonymity for future sperm and egg donors as part of an expected overhaul of UK fertility laws.
Peter Thompson, the chief executive of the Human Fertilisation and Embryology Authority (HFEA), said the rapid rise of consumer genetic testing websites such as 23andMe could soon make it impossible to guarantee donor anonymity – and that the law needs to be brought into line with this new reality.
Under rules in place since 2005, people conceived using donated eggs, sperm or embryos can access identifying information about the donor when they reach the age of 18, but donors can choose to remain anonymous until then.
“We feel that the technology of cheap DNA tests throws into question the underlying assumption [of anonymity],” said Thompson. “Given that, the responsible thing to do is to start a conversation about where we as a society want to go on these things. It’s a big change.”
He added: “You can see a position in the future where confidentiality just becomes impossible, whatever the attitude of families, the honest truth is that people will just find out.”
Lifting anonymity from birth would pave the way for the possibility of more contact between donors, donor-conceived people and their parents, and such a proposal would be likely to spark intensive debate.
The HFEA is seeking far-reaching changes to the 1990 Human Fertilisation and Embryology Act that governs the fertility sector and, after a consultation, is planning to propose draft legislation by the end of the year. The regulator is expected to demand greater powers to fine fertility clinics found selling ineffective “add-on” treatments and wants to make it easier for same-sex couples and single people to access treatment.
It will also review experimental scientific techniques that could benefit patients in future but would not be legal under current laws. The government will decide whether to pursue new legislation and any recommendations.
Thompson said the HFEA had not settled on a proposal around anonymity. One option under consideration is “a presumption of openness almost from the word go”, with the anonymity of donors being lifted at birth rather than at 18. “Given the trend, I can’t see how the existing legal framework is going to cope with the way things are going,” he said.
When asked if shortening or removing the period of anonymity could deter donors, Thompson said this concern proved unfounded when rules around anonymity changed in 2005, with donations dipping briefly and then recovering. “There’s no hard evidence that you would lose donors,” he said.
Egg and sperm donations have been on a broadly upward trend over the past decade and make up about 20% of IVF treatment cycles.
Before 2005, donors could opt for lifelong anonymity, but an increasing number are being identified. Louise McLoughlin, a 30-year-old journalist based in London, found her half-sister, Jess, two and a half years ago after signing up to 23andMe – both were conceived with the same sperm donor.
The sites allow users to “match” and make contact with genetic relatives on their databases. The pair were able to identify their biological father because his cousin in Canada had signed up to the site.
“He was very unwittingly thrown into this,” said McLoughlin. She has since met her biological father and says they have developed a bond. “I grew up with two parents and I really do think of the man who raised me as my dad,” she said. “I think of my biological father as a bit of a crazy uncle figure.”
McLoughlin, who hosts a podcast on the subject of donor conception, believes the law should be revised as she says being given access to information at 18 feels “arbitrary and cruel”. She also regrets not being able to know her half-sister earlier. “The fertility industry is creating people, not children, and we have the right to know any and all genetic history,” she said.
Others feel differently. Chlöe Woodmansterne, 29, from St Albans, was donor conceived in 1992 when anonymity was still in place, and has no desire to find her donor or any half-siblings. She questions the need for changes to the law. “I wonder if it wouldn’t be a little confusing for a younger child to have access to that information,” she said. “To have access to a donor to be able to almost leverage that relationship against your own parents could be a bit difficult I think.”
Sarah Norcross, the director of the fertility and genomics charity Progress Educational Trust, said any change to anonymity rules would raise complex questions, including about which stage in the process a donor would be identifiable and whether this would become part of the process of choosing a donor.
“Making donors mandatorily identifiable earlier in the process may cause more problems than the HFEA hopes to solve,” she said. “Donors, recipients of donation and donor-conceived people are all diverse groups, with varying preferences and perspectives. It is good to allow for a diversity of donor conception arrangements, rather than imposing one model upon everyone. Any proposed change to the law needs to be very carefully thought through.”
Prof Turi King, an expert in public engagement and genetics at the University of Leicester, said changing the rules around anonymity “doesn’t seem a crazy idea” as long as people were supported through the process.
