For donor-conceived people

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The HFEA Register - Information for donor-conceived people

It's natural to want to know about your genetic origins and the HFEA Register was set up with this in mind.  Parliament felt that it was right that people who were conceived using sperm, eggs or embryos donated by someone not known to them should have an opportunity to find out more about ´their' donor.


What is the HFEA Register?

The HFEA regulates fertility treatment in the UK and has a duty to keep a record of all the treatments that take place and the outcomes of all treatments.  The collection of records is known as the 'Register'.

More information:

> The HFEA Register - an introduction

> The HFEA Register - for donors

> The HFEA Register - for parents of donor-conceived children

 

Why is there a Register?

The aim is to give people conceived through donation an opportunity to learn about their genetic background and to help avoid biological relatives inadvertently marrying or having children. The Act came into effect on 1 August 1991.

What information does the Register have on 'my' donor?

The Register holds information on patient and partner registration at a clinic, donors, donor gamete treatments, in vitro fertilisation (IVF), embryo creation, embryo use and pregnancy outcomes.

Until recently, according to the law, the identity of those donating sperm, eggs and/ or embryos must remain confidential, unless the individual undergoing treatment already knows the donor(s). With this privacy in mind, certain information has been routinely collected for the Register since August 1991:

Identifying details of all individuals donating at HFEA-licensed clinics
Some non-identifying information about donors
Details of patients treated using gametes (sperm or eggs) provided by donors
The outcome of fertility treatments - including the birthday and sex of a donor-conceived child born to a named patient. 

The amount of non-identifying information available varies as it was not initially compulsory for donors to provide, but some individuals gave a description of themselves, stated whether they had children, or listed their interests.

Some of the following non-identifying information about donors will be available to people conceived with gametes donated between 1991 and July 2004:

  • Physical description of donor (height, weight, eye and hair colour, skin colour)
  • Year and country of the donor's birth
  • Donor's ethnic group
  • Whether the donor had any children
  • Any other details the donor may have chosen to provide, such as their occupation, religion, interests and skills

Additional information collected from July 2004:

  • Donor's parents ethnic group
  • Whether the donor was adopted;
  • Donor's marital status
  • How many children the donor already had (if applicable) and the gender of those children;
  • Details of donor screening tests and medical history
  • A goodwill message.

Please note that not every donor will have provided all types of information listed above.

Where can I get information about my donor?

If you are planning to marry, you can contact the HFEA to find out if, as a result of assisted reproductive technology, you may be genetically related to your prospective partner.  Until you reach the age of 18, this is all the information we will be able to give you.

Once you are 18 or older, you can contact the HFEA and ask for non-identifying information about the donor used in your creation (see above).  If your donor initially registered to donate before April 2005, but has subsequently re-registered as an identifiable donor (see below), we will also be able to provide you with the following additional information:

  • Your  donor's full names (and any former names)
  • Your donor's date of birth and the town or district where born
  • Your donor's last known postal address (or their address recorded at the time of registration)  


I've heard that donors are no longer anonymous. Does this mean I can find out the name of my donor?

The law changed from 1 April 2005, so that people donating gametes would do so on the understanding that they would be identifiable to any person conceived as a result of their donation. All details, both identifying and non-identifying , will be available to the relevant donor-conceived person making a request. This can happen once the donor-conceived person reaches the age of 18 (2023 onwards)  unless  the donor has re-registered - see below).


What if 'my' donor wants me to know who they are?

People who donated before April 2005 have the right to remain anonymous.  However, if they would like to be identifiable to any person conceived as a result of their donation, they can 're-register' as an identifiable donor. If they do, they may also be asked to provide additional non-identifying information about themselves.

Donors are encouraged to keep the clinic where they donated informed of any significant changes in the medical information provided - such as a diagnosis of a genetically inherited condition - so that the Register can be updated accordingly. Identifiable donors are also encouraged to update their clinic with any change of address.


What will my donor have been told about me?

In the past donors and their families were not expected to have an interest in knowing the outcome of a donation. Now, we know that many donors want to know if they have helped an infertile couple to have the family they longed for, and they may wish to tell to their own children about  any genetic siblings or half-sibling(s).

Donors can be told:

  • The number of children born as a result of their donation(s)
  • The number of girls and boys
  • The year they were born  

Donors will not be given any identifying information about you, so any decision about making contact will be entirely up to you.

Can I find out if there are other donor-conceived people who are genetically related to me?

We may be able to tell you if your donor had children of their own when they registered to donate. We cannot give you information about other people who had treatment using the same donor.

From 1991, there was a limit of 10 'live birth events', which meant that 10 couples or individuals could have children from the same donor. They might have had a single child, twins, or triplets, and could apply to use the same donor to have further children, who would be full genetic siblings to the first child(ren). This was allowed even if the limit of 10 live birth events had been reached. In 2005, the guidance was simplified to allow 10 families to be created from any one donor's gametes.

It may be possible to find links with other families whose child, or children, were conceived using the same donor gametes.  Contact the Donor Conception Network for more information.

I am donor-conceived and born before 1991. Where do I go to find out about my donor?

If you were conceived before the Register came into being in August 1991 and are interested in making contact with your donor(s) or any half-siblings, you can register with government-funded organisation UK Donor Link, which can potentially bring together donors, offspring and half-siblings via DNA testing (see Useful Contacts).

I'm not yet old enough to get information from the HFEA Register. What should I do next?

If you are considering getting in touch with the HFEA to find out more about your donor, there are quite a few things you might like to consider beforehand.  How you feel and how much you want to know about the person(s) who helped you to be born depends on your personal needs and wishes.

Your parents may have been able to tell you a great deal about the donor(s) they used, or may have no information at all. On the other hand, you may feel uncertain about letting your parents know you are thinking of contacting the HFEA and may not have discussed the issue with them. If you do choose to get in touch with the HFEA, we will not tell anyone that you have done so.

Before making contact with the HFEA, you may wish to consider:

  • The possibility that there will be less information than you would like, or that it may be very different from what you expected
  • What effect having this information may have on you.
  • Who you will tell that you are contacting the Register, such as your parents or other family members.
  • How your parents and other family members could be affected by your contacting the Register. Take time to plan how best to deal with this  

Once I reach the age of 18 or more, I'd like to contact my donor if they have agreed to be identified.

Contacting a donor 18 or more years after he or she donated has implications which require careful thought and preparation.  For example, how will you feel if the donor does not necessarily want to establish a relationship? You may find it helpful to have support from friends, family or an experienced counsellor - someone you can trust.  Remember: genetic connection isn't what makes for a loving family, as many people who have had children using donated sperm, eggs or embryos have proved.

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Last updated: 11 June 2008