People who donate sperm, eggs and embryos to help others have children will lose the right to anonymity from the moment the child is born, under proposed changes to UK fertility law.
Existing rules around IVF treatment state that children conceived from donor tissues can apply for details that identify their biological parents only once they reach the age of 18.
But the Human Fertilisation and Embryology Authority (HFEA) said a combination of easily accessible DNA testing, genetic matching services, and information sharing on social media had allowed people to sidestep formal routes and trace donors independently.
Julia Chain, the chair of the fertility regulator, said: “Nowhere in this field has the pace of social and technological change been more rapid than in the growing popularity of direct-to-consumer DNA testing and social media, with a lasting impact on donor anonymity.
“We need to balance the law with what is taking place in reality.”
Described by the HFEA as a “significant departure”, the proposal is among several published by the regulator on Tuesday alongside a public consultation on reforming fertility law that attracted nearly 7,000 responses. Any changes to the UK’s 33-year-old fertility laws, as described in the HFEA Act 1990, would need to be passed by parliament.
Under the original act, egg, sperm and embryo donors were granted full, continuing anonymity. But a change to the law in April 2005 allowed donor-conceived individuals to access identifying information about their biological parents when they turned 18. The move led to a temporary drop in sperm and egg donations, but numbers recovered and have broadly risen in the past decade. Donated sperm or eggs are now used in about a fifth of IVF treatment cycles.
Under the latest proposal, the anonymity of donors prior to 2005 would continue, and there would be no early removal of anonymity for donors after 2005.
The regulator said fertility clinics should be required by law to tell donors and recipients that the donor’s identity could be discovered through DNA testing sites and all those involved should have counselling about the implications before starting treatment.
Beyond changes to anonymity, the regulator wants the power to impose fines on fertility clinics that break the rules, bringing it in line with the Care Quality Commission, which fines poorly performing hospitals and care homes.
Further proposals from the HFEA aim to “future-proof” fertility law to ensure it is flexible enough to cover rapid advances in science and technology. Many scientists are lobbying for an extension to the so-called 14-day rule, enshrined in the act, which allows researchers to study donated human embryos in the laboratory for up to 14 days. More controversial issues are looming, such as how to regulate human embryo “models” created from stem cells, and whether human embryos should ever have their genomes edited to prevent hereditary diseases.
Dr John Appleby, a lecturer in medical ethics at Lancaster University, said donor-conceived children and their families often wanted to know about donors for a range of reasons, from making contact to understanding any relevant medical history. “As the law stands, these interests are potentially frustrated because identifying donor information is being withheld until the child is an adult,” Appleby said. “If the purpose of removing donor anonymity is to further the welfare of the child, it seems the recommendations the HFEA is making would help to bring the law more in line with this goal.”