HFEA register - an introduction

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'.

This fact sheet provides general information about the Register. Please also download  more detailed information about:

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 is held on the Register?

The Register holds information on patient and partner registration at a clinic, donors, donor gamete (insemination) 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) (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 (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 it, 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.

 

Has the law changed since the Act came into force?


Yes. The major change is to end the practice of donors donating on the condition that their identity would not be made known.

From 1 April 2005 all donations are made on the basis that the donor's identity will be made available upon request by their donor conceived offspring when they are 18.   The impact of this change will come into effect during 2023 unless a previously anonymous donor re-registers to become identifiable.  Information which can be provided to identifiable donor conceived offspring includes the non-identifying information listed above, plus:

  • The donor's name (and their name at birth, if different );
  • Date and place of donor's birth;
  • Last known address (or their address recorded at the time of registration) 

Do these changes affect past donors?

No. The identifying details relating to donors who donated before April 2005 on the basis that they would be anonymous will remain confidential.

What if past donors want to change their minds about being anonymous?

If past donors are now content for their identity to be released to the individuals conceived as a result of their donation, they have to re-register their consent at the clinic where they made their donation.  If this is not possible (for example, if the clinic has closed), they can re-register directly with the HFEA.

What about donor conception treatment that took place before 1991?

Donors, patients and individuals conceived before 1991 are not covered by specific legislation. Donors were usually anonymous, and there was no legal requirement to maintain records. There is a voluntary contact register set up by UK Donorlink for people to exchange information if they donated sperm or eggs before 1991, and for people over the age of 18 conceived using donated sperm or eggs see Useful Contacts.

Who is allowed to have information from the Register?

The 1990 Act stipulates who can have information from the Register. People over the age of 18 (or younger if they are planning to marry) who were conceived after August 1991, can apply to the HFEA for information to find out whether they were conceived using donated sperm, eggs or embryos and, if so, if they are related to their potential partner.  The first donor conceived individuals covered by the HF&E Act will reach the age of 18 in 2009.

Donor conceived people over 18 will be entitled to request information available about their donor (see list of possible non-identifying information above.  See also HFEA Factsheet, The Register - for donor-conceived people)

Can donors be given information about the results of their donation?

Yes. Donors, whether identifiable or not, can request at any time to know:

  • whether children have been born as a result of their donation and if so;
  • the number of children born
  • the number of girls and boys
  • the year(s) they were born. 

For more information, see The HFEA Register - for donors

Can parents obtain any information about donors?

Parents can request non-identifying information about a donor at the clinic where they are having treatment, either when they are selecting a donor for treatment, or subsequently.  Clinics are encouraged to respond as fully as possible to patients' requests for information about the donors whose gametes are used in their treatment. They can also provide the ?donor code' assigned by the clinic where the donor registered.

When it comes to providing information from the HFEA Register, information about whether a person has been born as a result of donor treatment can only be given to the individual making the request. It cannot be given to parents, grandparents or anyone else unless a court order has been granted. It is a criminal offence for HFEA employees or others whose job involves handling information on the Register to release the information to anyone not entitled to it.

See, The Register ?for parents of donor-conceived children.

How can I get information from the Register?

Those who are entitled to information from the HFEA Register can fill in an application form and return it to the HFEA. We will then carry out a search for the relevant information.

Useful contacts:

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 UK DonorLink register is for anyone over  the age 18 who was conceived through the use of donated sperm, eggs (or embryos), 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/

 

HFEA Factsheets (http://www.hfea.gov.uk/)
The HFEA Register ? for donors.
The HFEA Register ? for parents of donor-conceived children.
The HFEA Register ? for donor-conceived people.

Last updated: 25 July 2007