For parents of donor-conceived children

• What is the HFEA Register?
• Why is there a Register?
• What information is held on the Register?
• What information can I have about the donor used in my treatment?
• How many other children might have been conceived using the same donor?
• How do I find out if the same donor has been used to conceive other children, who are half-siblings to my child?
• Where can I go to find out the 'donor code'? 
• What information can the HFEA Register provide to me or my child?
• How should I tell my child/children about their conception?
• I was treated using a donor who donated after April 2005. How might I be affected if my child wants to contact 'their' donor?
• Useful contacts

What is the HFEA Register?

The Human Fertilisation and Embryology Authority (HFEA) regulates fertility treatment in the UK. It has a duty to keep a record of all registrations, treatments and outcomes that result from assisted reproduction techniques. The collection of records is known as the 'Register'.

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 donor-conceived people who are biologically related inadvertently marrying or having children. The Act came into effect on 1 August 1991.

What information is held on the Register?

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. You may also wish to see our related fact sheets:

> The  HFEA Register - an introduction
> The HFEA Register - for donors
> The HFEA Register - for donor-conceived people

Until recently, according to the law, the identity of those donating gametes (sperm or eggs) or embryos must remain confidential, unless the individual undergoing treatment already knows the donor(s). (See below for change to the law). 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 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 it but some individuals gave a description of themselves, stated whether they had children, or listed their interests.

In April 2005, the law changed so that people donating gametes from that date could no longer remain anonymous. All donor details, both identifying and non-identifying, will be available to donor-conceived people once they reach the age of 18. The impact of this change will come into effect during 2023 unless a previously anonymous donor re-registers to become identifiable.

What information can I have about the donor used in my treatment?

As a parent of a person who was donor-conceived after August 1991, you can ask the clinic where you were treated for non-identifying information provided by the donor. The clinic can also provide you with a 'donor code' assigned to the donor by the clinic at which they donated. You may also ask if the donor has re-registered to become identifiable, though only the donor-conceived offspring (your child) can be provided with the donor's identifying details once they reach the age of 18.

If you did not ask for or were not provided with non-identifying information about the donor when you were choosing a donor for your treatment, you can still go back to the clinic at which you were treated to ask for this.  If this is impossible (for example, if the clinic has closed down), you can write to the HFEA for information.

Clinics are encouraged to respond as fully as possible to former patients' requests for non-identifying information about the donors used in their treatment. But sometimes (particularly in relation to those who donated in the early 1990's) there is very little information for you to give your children.

Please note that if you went abroad for your treatment, the HFEA Register will not hold any information about you or the donor. We regulate UK clinics, and our Register only covers treatments carried out by HFEA licensed clinics in this country. 

For more information, see our page on Choosing a clinic.

If you were treated at an HFEA-licensed clinic, but the clinic used gametes (sperm or eggs) from an overseas donor for your treatment, then the donor will have had to provide the same level of information as a donor in the UK.  This means there will be information held about them on the HFEA Register.

How many other children might have been conceived using the same donor?

After 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.

Neither the HFEA nor the clinic where you had your treatment are allowed to release information to you about other patients. It may be possible to find links with other families whose child, or children, were conceived using the same donor gametes through the use of a voluntary contact register.   For more information, contact UK Donorlink or the DC Network.

How do I find out if the same donor has been used to conceive other children, who are half-siblings to my child?

You can contact the HFEA. We will be able to tell you: the number and gender of any other children born from the same donor's gametes; the year in which these children were born and whether the donor had children of their own at the time when they registered. We can also tell you if an anonymous donor has since re-registered as an identifiable donor.

Where can I go to find out the 'donor code'?

The clinic where you were treated should be able to give you this as long as there is nothing in the code (for example, the donor's initials) which could lead to the donor being identified. If it's impossible to get in touch with the clinic, for example, if it has closed since you had your treatment, then you can contact the HFEA.

What information can the HFEA Register provide to me or my child?

If your child is aged 16 or over and is planning to marry, they can ask if their prospective partner was conceived using the same donor and are therefore genetically related to them. 

When a donor conceived person reaches the age of 18, they can ask for non-identifying information about 'their' donor. If they were conceived using gametes donated after April 2005 (or if their donor has re-registered to become identifiable), they can also ask for identifying information about their donor. See the HFEA Register - for donor-conceived people.

How should I tell my child/children about their conception?

It is certainly best to be open with your child/children about the circumstances of their conception. Secrecy on this subject isn't in their interests and they will have a right to find out about their origins from our register when they reach 18. There is evidence that finding out suddenly, later in life, about donor origins can be emotionally damaging to children and family relations. So it is in your child/children's best interest to tell them early in childhood. It is vital that your child hears about ´their' donor from you and not from other people. 

For more information, see "Looking to the Future" in The HFEA Guide to Infertility.  The Donor Conception Network provides information and support to parents of donor-conceived children, and a range of materials to help you tell and talk to your child about donor conception, including "Telling and Talking" booklets which can be downloaded and a film.

Other organisations that may be able to provide information and advice or support are:

• British Association for Counselling and Psychotherapy - professional body for counselling and psychotherapy
• British Infertility Counselling Association - professional association for infertility counsellors and counselling in the UK
• ParentLinePlus - a national charity that works for and with parents.

I was treated using a donor who donated after April 2005. How might I be affected if my child wants to contact 'their' donor?

Parliament has decided that any donor-conceived person covered by the new law should have the right to information about how he or she was conceived and about the identity of the donor. 

It is impossible to predict the extent to which donor-conceived children will want to make use of the possibility to make contact. The experience with adoption is that around half of all adopted people seek information about their birth parents, but a much lower proportion go on to make contact.

Donor-conceived adults may say that they wish to know more about the person who gave something of his or herself to create them, in order to understand more about themselves.  Remember: genetic connection isn't what makes for a loving family - as many men and women who have a child or children used donated sperm, eggs or embryos have proved.

ACeBabes
ACeBabes offers support on pregnancy following fertility treatment, including donor conception, and information on telling children how they were conceived.
Telephone: 0845 838 1593
Website: http://www.acebabes.org.uk/

British Infertility Counselling Association (BICA)
BICA aims to promote high quality, accessible counselling services for those with fertility problems. It offers information to patients seeking details of counsellors specialising in infertility.
Telephone: 0114 263 1448Website: http://www.bica.net/

Donor Conception Network (D C Network)
The DC Network provides contact and support for people who have children conceived, or who plan family creation, using donated gametes through donor insemination (DI) and IVF with donor sperm or donated eggs.  Also provides support for adult, donor-conceived offspring.
Telephone: 020 8245 4369
Website: http://www.dcnetwork.org/

National Gamete Donation Trust (NGDT)
The NGDT was founded as a registered charity in April 1998 in order to raise awareness of, and seek ways to alleviate, the shortage of sperm, egg and embryo donors in the UK. The NGDT is a central reference point for donors, recipients and health professionals.
Tel: 0845 226 9193.
Website: http://www.ngdt.co.uk/

UK Donorlink
A pilot voluntary contact register set up to enable people conceived through donated sperm and/or eggs, their donors and half siblings to exchange information and - where desired - to contact each other. The register is for anyone over 18 who was conceived with donated sperm or eggs, or who donated in the UK before the Human Fertilisation and Embryology Act came into force in August 1991.
Telephone : 0113 278 3217
Website: http://www.ukdonorlink.org.uk/

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