FAQs relating to incorrect donor information

How many donor-conceived people and donors are affected by this issue?

We believe there are a small number of cases where the information released has not matched information that people have received from DNA matching services. So far, we‘ve been contacted by around 20 people and took action as soon as we were contacted about each case, who were all conceived between 1994 and 2003. Our priority has been to understand each situation and to give the individuals who have contacted us as much information as possible within the confines of the law as it stands.

Our website states that there may be very rare circumstances where our Register information conflicts with information individuals obtain themselves, and we also include this in letters to people applying for information.

Is there a possibility that other people may find themselves in a similar situation? Why can’t you just contact donor-conceived people and tell them?

There are several reasons why we can’t contact people first:

• We do not have contact details for donor-conceived people until they contact us.
• The Human Fertilisation and Embryology (HFE) Act says we can only give out specific information to donor-conceived people. What we can tell donor-conceived people depends on when they were conceived.
  • If it’s between August 1991 and March 2005, this can be non-identifiable information, such as the donor’s height, weight, eye and hair colour, the year and country they were born.
  • If it was after 1 April 2005, when donor-conceived people reach 18, they can get all of the information mentioned as well as receive their donor’s name, date of birth and last known address, and details like eye and hair colour.

What time period exactly are we talking about?

The cases we are aware of relate to treatments that took place over twenty years ago, and clinics and donor banks are very different now, with more robust systems in place.

How did this error occur in the first place?

The HFEA Register relies on clinics to give us accurate information and, in a small number of cases, the information we were given was incorrect. If this is due to a clinic error, it could have been made at the fertility clinic where the treatment took place, or at the clinic or donor bank where the donor donated.

The HFEA can only release information that is on the Register and, while we check it carefully with the clinic who recruited the donor before giving it out, the clinics who submit the information are the ones responsible for making sure it’s correct. We check where the donor that was used in treatment made their donation, as it is the recruiting clinic that keeps records of all the children born from that particular donor.

Why has this only come to light now?

This has come to light when donor-conceived people have requested information about their donors, or requested to join Donor Sibling Link, which allows donor-conceived people who share the same donor to exchange contact details. In these cases, donor-conceived people have later taken DNA tests available from DNA matching websites, and the links they’ve made have not matched the information they received from us. This is understandably distressing for all those involved.

Can you tell donor-conceived people the name of the clinic their parents were treated or donor donated when they apply for information?

UK law in this area is very restrictive and out of date. It belongs to a time when fertility treatment was not the subject of widespread public discussion, unlike today, and easily available DNA testing did not exist.

The law is worded in such a way that when a donor-conceived person contacts us for information about their donor, we can only give out specific information such as eye colour, hair colour and height. Unfortunately, we are not allowed to release information relating to where the donor donated or the clinic where treatment took place.

If individuals can discuss the fact they had a donor with their parent(s) and learn where the treatment took place, we will then be able to provide contact details of those clinics. If the clinic has closed and has passed their records to another clinic, we can provide patients (such as the donor-conceived person’s parents) with information as to where these records are held.

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. However, any decision is for Government and ultimately Parliament. Until then, we must operate within the current law.

How are you informing people they’re affected?

For those who have contacted us, we understand how important it is to them to have accurate information and have individually investigated each case as fully as we can. We don’t hold any contact details for donor-conceived people unless we’ve been contacted by them with a query.

We appreciate how sensitive this information is, and how it can have a direct effect on people’s lives and the relationships that may develop as a result of receiving it, particularly where they have made contact with genetic half-siblings through Donor Sibling Link.

We’ve also liaised with donor conception support groups who are, understandably, very concerned for the individuals involved. We have taken the time to fully explain our processes to them and direct them to the information we on our website.

What support is available for affected individuals?

There is specialist support out there, counselling and organisations who support donor-conceived people and we would urge people to reach out to these if they need to.

As the treatment provider, we expect clinics to support patients and address any concerns they have with their treatment, including use of donors. Finding out about your donor, and about any donor-conceived siblings you may have, can be an emotional process. There is information on our website on where donor-conceived people can find support, as well as things people may want to think about before requesting information about their donor or donor-conceived siblings.

I’m worried about the information I have received from you, what should I do?

We’d like to emphasise that we believe this to be a historic problem confined to a very small number of clinics more than 20 years ago.

We have no reason to doubt the quality of the information on our Register, which is the longest standing database of fertility treatment and outcomes in the world, and would like to do all we can to reassure anyone affected by donation that, if they have applied to us for information, we will have done everything we can to ensure the information provided matches up with the corresponding clinic.

In very rare circumstances, the Register information may conflict with information individuals obtain themselves (for example by obtaining a DNA test). This is stated on our website and in letters to people applying for information.

Who is ultimately responsible?

The HFEA Register is compiled from information provided by clinics, but the data is only as good as what is given to us by clinics. In these cases, it would be the donor bank where the donor donated, or the clinic where the donor-conceived people’s parents had treatment, which incorrectly recorded and submitted information.

It’s a requirement for HFEA licensed clinics to provide accurate information to us, our Code of Practice states that the clinic’s Person Responsible must ensure “data provided to the Authority about activities and data, which the Authority is required to hold on its Register of Information, is accurate and provided by dates specified in Directions or in writing”. It also states that clinics “should establish procedures to ensure patients, donors, and their gametes and embryos are accurately identified.”

How confident are you in the current system?

The standard of data submission and record keeping has vastly improved, which will reduce the risk of this happening in future. From the mid-2000s, there was an improvement in processes in clinics, such as the introduction of double witnessing when identifying and labelling samples, meaning the way the sector works is now more robust. Clinics also implemented a quality management system to ensure more robust checks were in place.

The fertility sector as a whole is generally very safe, with over 99% of cycles being carried out without incident. Where incidents occur, there is a statutory requirement for clinics to report them to us and we take them very seriously. We ensure clinics investigate each incident thoroughly so that they can learn from them, and we share this learning with other clinics.

How can the public trust the HFEA’s other data?

We believe that our Register data is of very high quality. As the longest standing database of fertility treatment and outcomes in the world, we ensure our data remains of high quality. When individuals raise concerns with us, we investigate as fully as we can and, where we identify a wider issue, we are open about this and share learning with clinics.

What changes have been made to ensure this doesn’t happen again?

Processes in clinics have improved over the years. In the 2000s, double witnessing was introduced into clinics as an HFEA requirement which involves double checking the identification and labelling of sperm samples before they were used in treatment. Quality management systems were also introduced into clinics to improve standards and ensure more robust checking systems were in place. Standards of submitting data to us and record-keeping has vastly improved, and so we would expect the small number of errors to reduce over time.

Is there a possibility that people accessing identifying information about their donors might encounter the same problem?

We cannot rule out the possibility of other people being affected. However, the standard of data submission and record keeping has vastly improved, which has reduced the risk of this happening in more recent cases and in the future. From the mid-2000s, there was an improvement in processes in clinics, such as the introduction of double witnessing when identifying and labelling samples, meaning the way the sector works is now more robust. Quality management systems were also introduced into clinics to improve standards and ensure more robust checking systems were in place.

Is the HFEA going to notify other people who were conceived with the same donor as the people who have contacted you, that their donor information might be incorrect?

We’re not able to contact people first as we do not have the contact details for donor-conceived people until they get in touch with us to request information about their donor.

Are you going to warn people when you release information about one of these donors known to have errors?

Where we are confident that we are releasing information that may not match DNA information, for example when a donor-conceived person requests to join the Donor Sibling Link, we will provide transparent information to the person involved.