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The HFEA's monthly newsletter for clinic staff

Special Edition
OTR service update

Background

By law, since August 1991, licensed fertility clinics in the UK have had a duty to submit data to the HFEA about donors, fertility treatments taking place and babies born as a result. This data is held on a secure database known as ‘The Register’. Our Opening the Register (OTR) service is managed by our Donor Information team, who are responsible for requests made to access information on this Register, communicating with the individual applicants and also with the relevant clinic(s) in order to verify information.

Soon, most donor-conceived children will become eligible to request identifying information about their donor following the removal of donor anonymity in the UK in 2005. However, releasing identifiable information is not new to the HFEA, over the years we have released the identifying information to those conceived from a donor who has reregistered with us. It is important to note though not all donor-conceived children conceived after 2005 will have an identifiable donor – as some were conceived with anonymous donors. Certain exceptions were made, for example for sibling use, and until the end of March 2006 there was a transition period, where clinics were able to use up any anonymous donations they had stored.

How are we supporting clinics?

We expect to see an increase in applications to our OTR service, and as a result we may be in contact with you more frequently to confirm Register information.
We understand that this increase could have implications on your staff resources, particularly where clinics recruit donors, so as well as providing regular updates we recently published a new resource to support clinics, ‘Clinic FAQs: Access to identifying information about donors for donor-conceived people from late 2023 onwards’.

We’ve also provided an overview of the HFEA OTR process and Register information, as well as clinics responsibilities, below in this special edition of Clinic Focus.

Who can access Register information

Requests for information held on the Register can be made by donor-conceived children who were conceived after August 1991, their parents, and by donors who donated after August 1991.

As donors who donated before 1991, and children conceived before this date can’t access Register information we signpost them to the Donor Conceived Register (DCR). The DCR links donor-conceived people with siblings and donors using accredited DNA testing. It also provides information, counselling and peer support.

We also process applications to join the Donor Sibling Link, which allows donor-conceived individuals over the age of 18 (conceived after August 1991) to exchange contact details with mutual consent, and a very small number of OTR applications from donor-conceived people who wish to find out if they are genetically related to their intended partner.

How applications are processed

Applications are initially made online securely via Docusign (along with the submission of relevant ID documentation). Our Donor Information team then accesses the relevant information from the Register.

At this stage we then cross reference this with information from clinics. This allows us to verify that the information that’s on the Register matches the clinic’s own records for the number of children born from that donor, their sex and years of birth. This is a really important part of the process as it ensures we can provide accurate and up to date information to applicants.

We then complete comprehensive checks, and a second member of the Donor Information team will review the data before this is shared with the applicant.

What is the HFEA doing to prepare for the increase in applications?

IT and Opening the Register service

The HFEA has invested in new IT systems and developed new processes for managing OTR applications to increase efficiency. We have updated our policies and received legal advice to inform processes. We have also developed register tools to aid extracting data from the register.

Support for those affected by donation

We are developing options for a multi-layered support service which has involved a review of international comparison of other models and systems where insights can be gained for a future UK model. We have carried out engagement with key stakeholders and used a survey to gain feedback from those affected by donation regarding ways donors and donor-conceived people can access specialist counselling and peer support, and how this should be funded.

Communications

We have an ongoing process of updating our website information to ensure it is relevant and accurate for all those affected by donation. We have created FAQs that will continue to be updated for clinics and are engaging with the media and on social media to raise awareness of 2023 and the implications for past donors, parents and donor conceived people. We have engaged at a number of specific speaking opportunities and other events to ensure our role in OTR is understood.

#WhoIsMyDonor campaign
We are preparing to launch our #WhoIsMyDonor campaign as the first people affected by landmark changes to UK donor anonymity law prepare to make history and apply for their donor’s identifiable information.

The #WhoIsMyDonor campaign aims to raise awareness of donor conception, of the information available to people impacted by egg, sperm and embryo 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.

Running from Tuesday 19 September 2023 to Wednesday 31 January 2024, there will be a suite of graphics, videos and articles appearing across the HFEA’s communications channels. We will also be working with the news media to raise awareness of the issue. Additionally, patient facing, and clinic facing FAQs will also be available, that aim to support people affected by donation to make decisions about their future.

Interested in finding out more or supporting the campaign? Contact us at press.office@hfea.gov.uk for a toolkit which provides graphics, messaging and other useful resources.

The role and responsibilities of clinics

By law, clinics have a duty to submit data to the HFEA Register about fertility treatments taking place and babies born as a result of treatment.

10 family limit reporting is currently being developed in PRISM - once the functionality has been tested, we will issue further communications in Clinic Focus. In the meantime, please ensure you do not breach the 10 family limit by checking with the recruiting centre or the HFEA to confirm the number of families created.

Our new clinic FAQs provide detail on the responsibilities of recruiting clinics and treatment clinics (including links to the relevant General Directions and Guidance Notes) – but we have outlined some of the clinic roles below:

Verification of information

Accuracy in responses to requests for information is essential as it can have a major and direct effect on people’s lives. We cross check our data with clinic data in order to ensure we are giving the applicants the most accurate and up to date information.

For applicants to receive their information in a timely manner, it is crucial that OTR requests are responded to within 28 days of receipt. The deadline for responding to the request will be clearly set out in the initial email sent by the HFEA.

We are aware that the process of verifying records from the archive can be very

time consuming, so if you become aware that you will not be able to meet the deadline, please inform the OTR team at the earliest opportunity.

Donor contact details

Where possible, recruiting clinics should encourage donors to update their contact details to avoid disappointing donor-conceived individuals and to keep informed of when their identifying information is first requested.

Some donors may be concerned about their home address being given out, and ask for an email address and/or phone number to be released instead. The law is very clear about what information can be given to the donor-conceived individual. Donor-conceived people will be able to ask for their donor’s name (and any previous names), date of birth, place and country of birth and last known postal address. Donors cannot specify which contact method can be given out. However, they can provide alternative contact details which they can request to be their preferred method of contact. This should be made clear to any donors you speak to.

Support

We understand that donors may have a range of reactions when anticipating contact with their donor-conceived offspring and in some instances require support when managing the release of this information. Further guidance on your responsibilities to provide counselling to donors can be found in Guidance note 3 – Counselling and patient support.

We’ve also provided links in our new clinic FAQs to a number of other resources you may find it useful to signpost to donors if they’re seeking additional support or information.

New FAQs for clinics

To support clinics, we’ve recently published ‘Clinic FAQs: Access to identifying information about donors for donor-conceived people from late 2023 onwards’. These FAQs are supplementary to guidance provided by the HFEA Code of Practice and the Clinic Focus articles published in January, April and July 2023. They represent a selection of the questions we have been asked by clinics about the release of identifiable donor information to eligible donor-conceived people who will be turning 18 from 2023.

Further information on sharing and redacting donor information is provided in the Handling donor information guide.

If you have any queries around donors, donor-conceived people, and access to identifying information, please check the guidance above before contacting your inspector.

Further information

We will continue to keep you updated via Clinic Focus. If you would like to attend a more in-depth presentation from the HFEA about the OTR service please contact us at enquiriesteam@hfea.gov.uk.

Editorial statement

Clinic Focus is the official electronic newsletter of the Human Fertilisation and Embryology Authority, is produced by the editorial team of the HFEA and provides a monthly roundup of news and information for clinics and their staff working in the field of fertility treatment.

No part of this publication may be reproduced without prior permission.

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