Donor Conceived UK has been approached by a number of Donor conceived People (DCP) where the information released from the HFEA Register has not matched the information that people have received from Direct-to-Consumer Genetic Testing (DTCGT).
Donor Conceived UK alongside PROGAR (a special interest group on assisted reproduction), raised this issue with the HFEA in August 2025 along with a specific case which is currently under investigation.
‘We call for acknowledgement and transparency regarding record errors and for appropriate support measures to be established for those affected, following the withdrawal of all commissioned support services in September 2024.”
As highlighted by Channel 4 (Wrong genetic info given to people born by sperm donation), the duty to maintain an accurate register of genetic relations for those affected by historic donor conception practices of anonymity has not been fulfilled. This failure has led to a significant loss of confidence among the donor conceived community.
Donor Conceived UK rejects the argument that meaningful improvements in clinic practices began in the mid-2000s, leading to a more robust system today. From its inception, the HFEA had responsibility for regulating the Human Fertilisation and Embryology Act and for maintaining records of all births conceived through donor gametes. The HFEA holds a unique regulatory position precisely because of the donor conceived population, yet it continues to fail to place their rights at the centre of fertility practice and policy.
Addressing the Entangled Relational Legacy of Donor Conception
If the HFEA truly wishes to encourage ‘a positive culture of best practice’, as outlined in its recommendations to modernise fertility law, it must also acknowledge the relational legacy left by historical practices.
Aside from the lack of focus on the donor-conceived experience, the HFEA’s proposals are insufficient to truly ‘future-proof’ the UK’s fertility laws. The emergence of DTCGT and the global legal trend towards full genetic transparency will continue to transform the landscape of donor conception and the unrealistic nature of donor anonymity. The HFEA’s proposals address changes such as DTCGT, but fail to acknowledge its full implications. Ultimately, this will result in more outdated laws and unnecessary legal complexity.
DCUKs full response to the HFEAs proposals to modernise fertility law can be found here, UK Legislation – Home.
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Notes
- More than 85,000 people have been born from donor treatment, through UK licensed clinics, since 1991.
- In some cases, clinics or donor banks will have closed since the donation or treatment took place. Often another clinic will have taken on a clinic’s records when they close. In these cases, HFEA contact the clinic which holds the closed clinic’s records, and the open clinic verifies the information they hold in those records on behalf of the closed clinic. For some other closed clinics there are other arrangements that allow the HFEA to request individual patient records and to verify the donor used by the patients by looking at these records.
- Between 2021 and 2025, more than 4,000 requests for information to the HFEA, relating to donation, have been responded to.
- By law parents do not have to disclose to their children that donor gametes were used in their conception therefore it is widely understood that the vast majority of donor conceived people don’t know they are donor conceived.
- Unless applicants to the HFEA records have also used DTCGT they will be unaware that the information given to them by the HFEA is incorrect.
- Donor Conceived UK is the only national organisation led by, and for, donor conceived people. We fill a huge and growing gap, addressing unmet life-span needs that are usually overlooked by fertility-focused organisations and minimised by Government.
- For more information visit our website, Home – A new peer-led charitable organisation to represent donor conceived people, donors and others affected by donor conception practises in the UK
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