Fresh plea from UK fertility regulator as monumental changes to donor anonymity law finally come to fruition

The first young people affected by landmark changes to UK donor anonymity law are just days away from making history as they become the first donor conceived people eligible to find out who their donor is.

Around 30 people who were conceived by egg, sperm or embryo donation from donors who registered after 1 April 2005 will turn 18 this year, with the first celebrating birthdays in October. This gives them the right to request their donor’s full name, date of birth and last known address from the Human Fertilisation & Embryology Authority (HFEA). To raise awareness of this landmark moment, the HFEA – the UK’s fertility regulator - has launched its #WhoIsMyDonor campaign.

The #WhoIsMyDonor campaign aims to raise awareness of donor conception, of the information available to people affected by egg and sperm donation and how they can apply for it. It also acts as a fresh reminder for donors to update their information ahead of the first donor conceived people becoming eligible to apply.

Rachel Cutting, Director of Information & Compliance at the Human Fertilisation & Embryology Authority (HFEA), said:

“An egg or sperm donation made 18 years ago could rightly feel like a distant memory for some, and forgetting to update contact details is easily done. However, giving the correct information to the donor conceived person and notifying the donor an application has been made, can help facilitate successful communication and may reduce any emotional impact.

“We know that around 30 young people were conceived by donors who donated from 1 April to 31 December 2005 and, by the end of 2030, this rises to 2,406 people. One quick email or phone call by a donor to the clinic where they donated, or to the HFEA, can make a huge difference to a donor conceived person’s life. We hope the #WhoIsMyDonor campaign removes barriers to contact, and ensures all those affected by donor conception have the best possible outcome.”

The law changed in 2005 to ensure that everyone has a right to information about their genetic origins. This means that anyone who registered as an egg, sperm or embryo donor from 1 April 2005 would be identifiable once any child born from their donation turns 18. Not having information about your genetic origins has been shown in a number of studies to have a significant impact on donor conceived individuals and so donors who donated anonymously before the law changed, have long been encouraged to lift their anonymity via the HFEA if they are comfortable with this.

Professor Jackson Kirkman-Brown, Chair of the Association for Reproductive and Clinical Scientists (ARCS), said: “This is a very important time for young adults who were conceived by the use of donor sperm or eggs. Many will hope to find out more about their donors as they reach 18, ARCS strongly believe the best way to do this is through the HFEA. ARCS therefore urge all donors to get in touch with the clinic where they donated or to contact the HFEA to ensure that their contact details are up to date.

“There are now many other ways that a donor could be identified such as home ancestry tests and historic donors will usually not have had information and support around this – we therefore encourage them to reach out now and get the accurate guidance, support and information they require and deserve. Being a donor is an incredible gift and alongside the sector ARCS are keen to recognise and support those who enable people to have the families they desire.”

Dr Marta Jansa Perez of the British Fertility Society (BFS) said: “This is a very important landmark for those people who were conceived by the use of donor eggs or sperm since 2005 as when they reach 18 they will be able to receive identifiable information about their donors. The British Fertility Society would like to encourage all donors to get back in touch with the clinic where they donated or to contact the HFEA to ensure that their contact details are up to date, so that donor conceived people can have information on their genetic origins if they so wish to.”

Rachel continues: “By law the HFEA must provide a donor’s full name, date of birth and last known address when a donor conceived individual applies for it. However, just as life moves on, so do communications. If a donor indicates that they prefer to be contacted by phone or email rather than by post, the HFEA can also pass that information on to the individual.”

Ben, 21, who supports the HFEA’s #WhoIsMyDonor campaign, was told he was donor conceived at a young age.

Ben said: “I have always known I was donor conceived, and now at the age of 21, being donor conceived is still a positive part of my life, even through challenges of making sense of the different levels to my identity. However, none of this would have been possible without the information that is available to me and my family to navigate the conversations about building a family through donor conception. I believe my family is closer because of that support and information through the HFEA and the Donor Conception Network (DCN); it has guided me to discover more about my own DNA. I want other families to be able to have this support to explore who they are as a family, and recognise, like I did, that donor conception can make a family closer rather than more separate.”

Set up in 1991, the HFEA is the independent regulator of fertility treatment and human embryo research in the UK. Since donor anonymity law changed in 2005, it has provided the Opening the Register (OTR) service, through which it releases specific categories of information to donor conceived people, their parents or their donors.

Over 70,000 donor conceived children have been born since 1991 and today, donor conception accounts for 1 in 6 IVF births in the UK and 1 in 170 of all UK births. By 2030, we predict there will be an average of one or two donor conceived children in every English state primary school.

Free, clear, and impartial information about fertility treatment, clinics and egg, sperm and embryo donation is available at hfea.gov.uk.

Ends

For more information or for interviews with a HFEA spokesperson, please contact press.office@hfea.gov.uk or call 020 7291 8226.

For out of hours requests, please call the duty press officer on 07771 981920.

Notes to editors

• The #WhoIsMyDonor campaign will run between 19 September 2023 to 31 January 2024.
• The number of donor conceived individuals who turn 18 in October and are therefore the first to become eligible to apply for their donor’s identifying information is ‘less than 5’. The HFEA is unable to provide a specific figure due to risk of identification.
• The data table below shows the number of donor conceived individuals who were conceived and born after donor anonymity law changed in 2005. This data does not include pre-2005 donors who have since dropped their anonymity.

About the HFEA

• The HFEA is the UK’s independent regulator of fertility treatment and research using human embryos
• Set up in 1990 by the Human Fertilisation and Embryology Act, the HFEA is responsible for licensing, monitoring, and inspecting fertility clinics - and taking enforcement action where necessary - to ensure everyone accessing fertility treatment receives high quality care.
• The HFEA is an ‘arm’s length body’ of the Department for Health and Social Care, working independently from Government providing free, clear, and impartial information about fertility treatment, clinics and egg, sperm and embryo donation.
• The HFEA collects and verifies data on all treatments that take place in UK licensed clinics which can support scientific developments and research and service planning and delivery.
• Around 4,100 children in the UK are born each year through the help of a donor (2019). The HFEA holds records of all donors and children born since 1991.
• The HFEA is funded by licence fees, IVF treatment fees and a grant from UK central government. For more information visit, hfea.gov.uk.