HFEA statement: Incorrect donor information

Peter Thompson, chief executive of the HFEA, said:

“The HFEA is aware of a small number of historic cases where the information released from our Register has not matched the information that people have received from DNA matching services. We are sorry for the distress caused by this information and we appreciate how sensitive it is.

“Our investigation into the cases highlighted by Channel 4 has found that they are the result of clinic error. Clinics are responsible for providing accurate information to our Register, not the HFEA. In cases where DNA evidence suggests that a clinic has not provided the HFEA with the correct information, the clinic would be expected to investigate any errors and report them to us.

“Every case raised with us is given individual care and attention. We carefully check all records submitted by clinics and ensure the information matches what we have on our Register before it is given to donor-conceived people.

“From the mid-2000s, there was an improvement in processes in clinics, meaning the way the sector works is now more robust.

“For more information, visit the HFEA website.”

Ends

Notes

• More than 85,000 people have been born from donor treatment through UK licensed clinics since 1991
• Between 2021 and 2025, more than 4,000 requests for information relating to donation have been responded to
• The HFEA follows a robust process, as each information request passes through a number of very stringent checks and that part of the process involves contacting clinics to check the information that they hold. This often involves the clinic accessing archived records, or recalling notes from storage, which can take considerable time
• The clinic which carries out the treatment submits information to the Register about the treatment being undertaken. In the case where a donor is recruited in a UK clinic, the donor details are submitted to the HFEA by the recruiting centre, which can be different to where treatment takes place. It is the clinics who are responsible for the accuracy of this information, so it is essential before an application response is released, we are confident in its accuracy. The information we ask clinics to cross check includes, for example, the donor code used in treatment and registration paperwork
• 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, we 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 us to request individual patient records and to verify the donor used by the patients by looking at these records.
• We have made a range of proposals to modernise fertility law, including a proposal to enable parents to access identifying information about the donor shortly after birth. This reflects changes in social attitudes since the HFE Act was introduced in the 1990s, and the rise in use of new technologies such as easily available DNA tests. However, any decision is for Government and ultimately Parliament. Until then, we must operate within the current law.
• You can read more on our website.