Clinic FAQs: Access to identifying information about donors for donor-conceived people from late 2023 onwards

Last updated: September 2023.

These Frequently Asked Questions (FAQs) are supplementary to guidance provided by the HFEA Code of Practice and the Clinic Focus articles published in January, April and June 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.

Background
The centre’s role in the Opening the Register process
Preparing for the expected increase in applications

1. Background

1.1 What is the HFEA Opening the Register (OTR) service?

The HFEA Opening the Register (OTR) service discloses information to donors, donor-conceived individuals, and their parents in accordance with the law. Applicants can apply to this service through our website to find out information about donors and the outcomes of donor treatments.

Our Opening the Register service is managed by the HFEA’s Donor Information team, who are responsible for disclosing information on the basis of the statutory access rights.

1.2 What is happening in 2023?

From the end of 2023, the first group of donor-conceived people who are impacted by the 2005 changes to the law, will become eligible to apply to the HFEA for identifiable information about their donor. As such, we anticipate an increase in the number of OTR applications from donor-conceived people seeking identifying information about their donor.

It is important to be aware that not all donor-conceived children conceived after 1 April 2005 will be able to receive identifiable information about their donor. This is because:

there was a transitional period in which clinics were able to use up any anonymous donations they had already collected
patients could use donor eggs, sperm, or embryos of anonymous donors if they wanted a full genetic sibling for a child they had already conceived, and
patients who created and stored embryos using an anonymous donor prior to the law change could use the material after the law came into force.

The number of donor-conceived individuals eligible to apply for identifying information about their donor is highlighted in our April 2023 press release.

Clinics may start to see an increasing number of donors and donor-conceived individuals contacting them for support and information or to update their contact details. Clinics may also start to notice the HFEA getting in touch more often to verify information before responding to OTR requests.

Confirming this information is a valuable step in the OTR process, as described in 1.3. To prevent any delays in releasing information, we would appreciate that clinics respond promptly to our requests.

1.3 What information is disclosed by the HFEA?

Sections 31ZA to 31ZE of ‘the Act’ provide statutory rights for some individuals to be provided with Register Information in specified circumstances. The OTR service allows those who have a statutory right (or have been granted discretionary access by the HFEA, in the case of parents of donor-conceived children) to apply through our website to access information on the HFEA Register.

Parents of donor-conceived children can find out the number, sex, and year of any other children born from the same donor(s) used to conceive their children, as well as non-identifying information about the donor. They can also find out whether the donor will be identifiable to their children when their children turn 18. Since 1 April 2005, all donors who have registered with the HFEA are identifiable donors.

Once a donor-conceived person turns 16, they can access this same non-identifying information about their donor and other children born from their donor independently of their parents. When they are 18, if they were conceived with an identifiable donor, they can additionally access the donor’s identifying details. These include their donors name, date of birth and their last known address.

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

Donors can find out the number, sex and year of any children born from their donation. If donors donated before the 2005 law change and wish to become identifiable to any children born as a result of their donation, the HFEA also process applications from anonymous donors who wish to remove their anonymity.

1.4 How does the HFEA process OTR applications?

When making an application to the HFEA, applicants provide personal details through a secure online process to allow the relevant treatment and donor to be identified on the HFEA Register.

A Register report is run to show all treatments from the donor that resulted in a live birth, pregnancy, lost-to-follow ups, and unknown outcomes. This report details the number, sex and year of birth for all live births. The report can then be used to find out how many children were born from this donor and therefore how many donor-conceived children or donor-conceived siblings the applicant or applicant’s child has.

Treatments on the report will be investigated where it is not clear whether a live birth occurred because of errors or incomplete data, for example a treatment is recorded as resulting in pregnancy but there is no record of whether a live birth resulted.

The HFEA will then contact the clinic that recruited the donor (or if that clinic is closed, the clinic which now holds the records) directly to check that the information on the Register matches the information that the centre holds about the outcomes of treatment. If we are not able to verify all the data with the recruiting clinic, the Donor Information team may also need to contact the clinic where the treatment took place.

Once the data has been verified by the clinic, a second member of the Donor Information team will review the data before this is shared with the applicant.

Parents and donor-conceived applicants also receive information about the donor from the Register from the donor’s information form submitted at the time of donation, and where provided, a copy of the donor’s handwritten information from pages 3 and 4 of the donor registration form (reasons for donating, goodwill message and personal description).

Where there are any questions or clarifications needed about the donor’s information, the HFEA will contact the clinic which recruited the donor, usually at the same time as confirming live birth information.

If clinics are unable to provide the HFEA with the information requested in a timely manner, applicants will be directed to the relevant centre for further information.

2. The centre’s role in the Opening the Register process

2.1 What are the clinics’ responsibilities?

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. The categories of Register Information held by the HFEA are set out in the HFEA's Data Dictionary. General Direction 0005 defines what information must be submitted to the Register. Guidance on submitting data via Patient Register Information System (PRISM) is available from the Clinic Portal: PRISM.

Recruiting clinics

Guidance note 11 of the Code of Practice sets out the responsibilities of clinics when recruiting donors.

The Donor Information team will verify donor records with the recruiting clinic in the first instance. Recruiting clinics should therefore maintain an independent record of treatments performed using the gametes or embryos created with the gametes of donors they have recruited. This should include the outcomes of any treatments, including the sex and year of birth of any live births resulting from this treatment.

The recruiting centre is responsible for updating the Register with new information provided by the donor. Where the clinic is open, donors are encouraged to update their contact details at the clinic in which they donated.

The 10-family limit

The recruiting clinic is responsible for ensuring that the number of families created using one donor do not exceed the 10-family limit (or any lower number as specified by the donor). It is the responsibility of the recruiting centre (not the HFEA) to contact clinics they have supplied donor gametes to confirm live births.

Information on monitoring and complying with the 10-family limit can be found in Guidance note 11 of the Code of Practice. Please contact Register@hfea.gov.uk if you have more questions on complying with the 10-family limit.

Treatment clinics

Each treatment centre is responsible for updating the HFEA Register when a donor’s material is used in treatment at their clinic.

In order for the recruiting centre to maintain accurate records of donor use, the treatment centre should additionally notify the clinic which recruited the donor when the donor’s gametes (or embryos created using these gametes) have been used in treatment; confirming any live births and/or creation of embryos to be placed in storage with the recruiting centre. If a clinic wishes to sell sperm for use by another patient or centre, they should defer to the recruiting centre to ensure that further use will not exceed the 10-family limit.

If you have any questions about our guidance, please contact your clinic inspector.

2.2 Why does the HFEA need to confirm information with centres?

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 centre data in order to ensure we are giving the applicants the most accurate and up to date information.

There are at times inconsistencies between the data recorded on the HFEA Register and that held by centres. Reasons for these variances include incorrect donor or centre codes submitted on treatments forms, cycles reported as donor cycles when they are not, or frozen cycles not recorded as using donated gametes.

When contacting the clinic, the HFEA will send a copy of the anonymised Register report and ask clinics to crosscheck the number, sex and year of birth of any live births from a particular donor against their own records of outcomes from this donor. Where there are ambiguities in the Register data, we will explicitly state these and request that clinics attempt to verify the data. If there are any additional live births, or any of the details of the sex or year of birth differ to the Register information, the clinic should note this in their response.

If the clinic holds data which conflicts with Register information, the clinic where treatment took place should be contacted by the recruiting clinic to check, for example, which donor was used in a treatment, or the sex of a live birth.

The Donor Information team may additionally ask for scanned copies of pages 3 and 4 of the donor information form to be uploaded to the Patient Register Information System (PRISM) if these are missing from the Register. These pages include the donor's reasons for donating, occupation, interests and personal description (pen portrait) and message to the parents and child (goodwill message).

2.3 How will the HFEA contact the clinic?

Clinics should have a standard operating procedure which details the process they will undertake when a request is made of them and a designated contact who is responsible for responding to Opening the Register requests. This staff member should be fully trained on handling the request, including accessing archived records, and have the capacity to respond within 28-days of the request being received. Clinics should additionally have a contingency plan in place which covers who will handle requests when there is a busy or transformational period at the centre (ie to cover clinics merging or staff annual leave).

Clinics should proactively update the HFEA when the designated OTR contact(s) changes. Their name and contact details should be sent to Opening.TheRegister@hfea.gov.uk. Where there are different members of staff who should be contacted about queries for sperm donors, egg donors, or embryo donors, this should be specified by the clinic.

Clinics should make the HFEA aware of any special conditions or requests that the OTR team need to fulfil to help them respond to our requests. For example, if you will always need specific patient identifying details.

2.4 Is there a timeframe to respond?

For applicants to receive their information in a timely manner, it is crucial that Opening the Register 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.

If the clinic becomes aware that they will not be able to meet the deadline, they should inform the OTR team at the earliest opportunity – providing a revised timeframe where possible.

We are aware that the process of verifying records from the archive can be very time consuming and may mean that a clinic is not able to adhere to the 28-day deadline. We ask that in these circumstances clinics please begin this process as promptly as possible and inform us of any anticipated delay.

2.5 How frequently will clinics be contacted to verify information?

Since 2011, clinics have been contacted to verify data for OTR applications made to the HFEA. Information will need to have been validated for each Register report made in relation to an application.

At times, donors or donor-conceived people make repeat applications to the OTR service for information on the outcomes of additional donations, or for further information on their donor or donor-conceived siblings. If the Register report indicates that a donor’s gametes have recently been used in treatment, the OTR team will contact the centre to verify any additional live births confirmed since the most recent application.

The Donor Information team may also ask clinics to confirm information if more than 5 years have passed since the information was last confirmed.

To allow centres time to report the outcomes of donor treatments, we suggest that donors wait at least a year before and between making applications.

2.6 What is the current demand for OTR applications?

You can view the current wait time for receiving information here: Apply for information. Applications are processed in the order in which they are received.

2.7 Can clinics provide information directly to donors, donor-conceived people or the parents of donor-conceived people?

Donors

Donors can request information about children conceived using their donation by making an OTR application or by contacting the clinics at which they donated. Due to current waiting times for Opening the Register requests, contacting the recruiting clinic may be quicker than requesting this information from the HFEA.

As stated in Mandatory Requirement 11B of the Code of Practice, if donors of gametes and embryos ask, the Person Responsible (PR) at the recruiting centre must provide the following information about any children born as a result of their donation:

number
sex, and
year of birth.

Clinics should not proactively provide this information to donors. Donors must have requested this information before the clinic provides it.

When clinics are releasing non-identifying information to a donor or donor-conceived person’s parents (successful recipients of the donation), the PR is ultimately responsible for ensuring the accuracy of the information provided. When considering the release of any relevant information, centres should ensure that disclosure would not breach the Data Protection Act 1998 or any confidentiality rights.

If you are unable to provide this information directly, please direct donors to our Opening the Register service.

Donor-conceived people’s parents

Clinics can disclose non-identifying information about a relevant donor(s) to parent(s) who received donor-assisted conception treatment at their clinic. This information includes all non-identifying information held about a donor, including:

physical description (height, weight, eye, hair and skin colour) of the donor,
the donor’s year of birth,
the donor’s ethnicity,
whether the donor had any children at the time of donation,
any additional information the donor chose to supply such as their occupation, religion, interests and a brief self-description, and
whether they have agreed to share their identity with people conceived from their donation when they turn 18.

Parents may only be interested in seeing some, but not all of this information. Therefore, clinics should confirm which information parents wish to obtain before disclosing this. It is important that clinics redact all details that may identify a donor from their goodwill message and pen portrait before sharing this with the parents of a donor-conceived person. A detailed guide on how to appropriately redact identifying information is provided on this page of the Clinic Portal: Handling donor information guidance.

If the donor or the parent of a donor-conceived person has requested information from the clinic, and the clinic are releasing the non-identifying information, they should make the donor or parent(s) aware that they should withdraw any outstanding OTR applications they have made to the HFEA for the same information.

Donor-conceived people

Clinics are prohibited from disclosing identifiable information about donors. If a clinic discloses identifiable information this needs to be reported to their clinic inspector as an incident.

If clinics receive a request from a donor-conceived person for identifying information, you must direct them to make an application through the HFEA Opening the Register service. Applicants who require an accessible version of the application form will need to contact the Donor Information team directly at opening.theregister@hfea.gov.uk.

Whilst there are no prohibitions on clinics releasing non-identifying information about donors to their donor-conceived offspring, clinics may prefer to signpost to the HFEA’s Opening the Register service for such requests.

2.8 Can clinics remove the anonymity of a donor directly if requested?

Anonymous donors can contact the clinic or the HFEA to retrospectively remove their anonymity. Further guidance on the process of removing a donors anonymity via PRISM is provided here: Clinic forms.

During this process, clinics should clearly inform donors that if they re-register as an identifiable donor, their anonymity cannot be re-instated at a later date. Donors should also be offered the opportunity to seek counselling as part of this process. Where relevant, clinics should also communicate the importance of identifying information for people conceived using donated gametes or embryos.

If a donor wishes to remove their anonymity with the HFEA directly, please direct them to the following webpage: Remove your donor anonymity.

Donors who do not want to re-register as identifiable can still update their non-identifying personal information, such as their goodwill message or pen portrait, giving donor-conceived individuals greater insight into where they came from. We provide information for donors on this page of our website to help guide them when updating these messages: Your message to future donor-conceived families.

2.9 A donor has requested that their email address is released instead of their last known postal address, is this possible?

Some donors may be concerned about their home address being given out and ask for an email address 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 are not able to ask for only an email address to be given out and not a postal address. This should be made clear to any donors you speak to.

It is possible for a donor to provide additional contact information, such as a telephone number and email address, which can be noted to be their preferred method of contact. However, the donor-conceived person will ultimately decide what method they choose when contacting the donor.

3. Preparing for the expected increase in applications

3.1 How is the HFEA preparing for the expected increase in applications?

The HFEA is carrying out several activities to support clinics and ensure we are as prepared as we can be for the expected increase in applications to our Opening the Register (OTR) service.

We want to ensure that our patient, clinic, and public communications on this are thorough and effective, and will do this alongside reviewing the systems and processes we have in place to ensure we give out accurate and timely information to donor-conceived individuals and donors. We provide regular updates on this work to the Authority, which can be viewed at: Authority meetings.

3.2 Will the HFEA be tracing donors?

When an OTR application for a donor’s identifiable information is first made, the HFEA will attempt to notify the donor using the last known address on the HFEA Register to inform them that a request for their information has been made and to signpost them to support. Donors may also update their address and provide additional contact details at this point, however we will not await a response from the donor before the release of identifying details.

Following concerns raised by professional stakeholder groups that the HFEA and/or clinics may not have the donors’ latest address, the Authority considered the complex issues around whether the HFEA should trace donor addresses and whether a third-party database could be used to facilitate this. These complexities and the risks are outlined in the detailed Authority paper presented at the May 2023 meeting.

The Authority agreed it was not appropriate for the HFEA to proactively trace donors. As such, we will continue to notify egg, sperm and embryo donors the first time a donor-conceived individual has requested identifiable information about them, using the donor’s last known address as recorded on the Register. Clinics should be aware that it is therefore possible that the HFEA will release information about a donor without being able to inform the donor first.

3.3 What can clinics do to prepare?

In light of the expected increase in applications, clinics should consider the implications for their staff resources, particularly where clinics recruit donors.

As we increase our communications around releasing donor information, clinics may notice an increase in donor-conceived people, their parents, or donors coming forward to request information. In addition to this, we anticipate an increase in the number of OTR applications made to the HFEA, which may mean we will be in contact more frequently to verify Register information.

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. Where the recruiting clinic is open, donors are encouraged to update their contact details at the clinic in which they donated. Some clinics are starting to contact their donors to check their addresses, to remind them that their identifying information may be released if requested, and to offer support.

We advise clinics to be cautious when proactively contacting donors to update their addresses so as not to breach donor confidentiality. While some donors may welcome the possibility of their identifying information being released, others may be concerned, for example, if they haven’t told their family about their donation. It is important that donors’ expectations are managed throughout this process and we recommend that clinics offer counselling to donors coming forward.

As noted in the HFEA’s Code of Practice (paragraph 3.5), the centre should provide proper counselling throughout the treatment, donation or storage process, and afterwards if requested. […] If a person who has previously donated gametes or embryos (including mitochondrial donation), or received treatment, requests counselling at any point, the centre should take all practicable steps to help them obtain it.

For additional support and information, you may wish to signpost to the information and support services provided by the HFEA and others.

3.4 Where can donors find information and support?

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. For further guidance on the clinics responsibilities when offering and providing counselling to donors, please review Guidance note 3 – Counselling and patient support.

Clinics may find the following resources useful to signpost when approached by donors seeking support or information:

Preparing for possible contact from someone conceived from your donation – Here we outline a selection of questions which identifiable donors may wish to consider when an adult conceived from their donation applies to access their identifying information.

Rules around releasing donor information – Written for donors, this page of our website describes what information donor-conceived people are able to request from the HFEA.

Remove your donor anonymity – Here we explain how anonymous donors can remove their anonymity by making an application to the HFEA.

Support and intermediary service - Our support and intermediary service offers re-registering and identifiable donors affected by post-donation issues the opportunity to access a number of free support sessions with a qualified professional.

British Infertility Counselling Association (BICA) – For those not eligible to access support via the HFEA, BICA provide a directory of counsellors with expertise in supporting people dealing with issues around infertility, including donor conception.

Donor Conceived Register (DCR) – Run by the Liverpool Women’s NHS Foundation Trust the DCR helps to connect donor-conceived people who were conceived before 1 August 1991 with their donor and siblings.

Donor Conceived Register (DCR) Registrants – A growing community of registrants of the Donor Conceived Register who provide support to donor-conceived people or donors.

Donor Conceived Network (DCN) – A charity network offering information, support and community of donor conception families and donors.

Chana – The leading UK fertility support organisation for the Jewish community. Chana supports couples with the emotional, practical, halachic and financial challenges of infertility, baby loss, miscarriage and any reproductive health issue.

LGBT Mummies – A support organisation for LGBT+ women and people on the path to motherhood or parenthood. LGBT Mummies provides guidance on different family creation pathways and support for LGBT+ families.

TwoDadsUK – An organisation supporting those on a journey to become parents via Surrogacy. TwoDadsUK was originally set up to help destigmatise surrogacy and positively promoting same sex parenting.

Table of contents

1. Background

2. The centre’s role in the Opening the Register process

3. Preparing for the expected increase in applications