The legal situation for the donor conceived in the UK

This article has been written for UK donor-conceived adults about their legal rights to access information and make contact with their donor(s) and donor-related siblings.

Overview

The first UK law regulating donor conception, the Human Fertilisation & Embryology Act, was passed in 1990 and came into force in August 1991. Although it set up a UK Register of Information, run by the Human Fertilisation & Embryology Authority (HFEA), that includes details of all sperm, egg and embryo donors and offspring conceived from donor conception treatment in a UK licensed clinic, it also said that donors should be anonymous. Following a long campaign to lift donor anonymity, this was finally achieved in April 2005. These gave anyone conceived after this date the right to be given the identity of their donor, on application from the age of 18 onwards. However this right was not made retrospective. In other words, it was not extended to anyone conceived between August 1991 and April 2005 unless their donor came forward to the HFEA and agreed to be identified. The 2008 Human Fertilisation & Embryology Act included specific reference to the importance of anyone conceived with the help of a donor being told of their origins from early childhood.

UK law does not apply to anyone conceived at an overseas clinic but it does apply to anyone conceived in a licensed UK clinic since August 1991 if sperm or eggs imported from overseas were used. UK law does also not apply to anyone conceived through the use of an informal donor (i.e. outside of a clinic) or where sperm is imported from overseas but no treatment clinic is involved. Anyone conceived prior to August 1991 has no legal right to information about their donor but, in the UK, they can voluntarily register with the Donor Conceived Register. The DCR is open to donor-conceived adults, donors and the non-donor-conceived offspring of donors. It seeks to ‘link’ people who are genetically related through the use of DNA testing.

I was conceived at a clinic in the UK before there were any laws, what rights do I have?

Unfortunately, anyone conceived in a clinic before August 1991 has no legal right to access any information held in the records of the clinic involved. Many such records have anyway been destroyed and for those that remain in existence, it is entirely up to the ‘owner’ as to whether to release any information from them. A small number of records from that time were passed to the Human Fertilisation and Embryology Authority (the regulatory body set up by the 1990 Act) so it’s worth checking with them. However they will not release any identifying donor information from them and in fact these older records rarely contain much detail anyway.

Regardless of whether or not you know which clinic was involved, then it can still be useful if you have any information provided to your parent(s) about the donor.

You can register free with the UK’s voluntary Donor Conceived Register which includes donors and the non-donor-conceived offspring of donors as well as donor-conceived adults. It will ask you to supply a DNA sample (a mouth swab) which it then tests against all other registrants to see if there is anyone to whom you may be genetically related. Registration is free but you have to pay for the DNA test (currently £100) unless you are in financial hardship. The DCR also provide professional support at all stages and intermediary services (in the event of you being linked with anyone) free of charge.

There are also some international registers, such as the Donor Sibling Registry. These are worth checking out but may be of limited help if you don’t have much information about your conception. For example the DSR can be especially useful if you were conceived with sperm from the US (either imported or because your mother was treated in the US) and you have the donor’s code – but there have been success stories even without such information especially as numbers of registrants grow.

I was conceived at a UK clinic after August 1991 and before 1st April 2005, what rights do I have?

If you are aged between 16 and 18, you can ask the Human Fertilisation and Embryology Authority for details of how many donor-related siblings have been born as a result of licensed treatment, their sex and year of birth. You can also check back at a later date to see if any more have been born. Your parents can also request this information together with non-identifying information about your donor such as height, weight, colouring, a self-description written by the donor(s) (if they provided one) at any time after your birth until you reach the age of 18. There are no charges for these services.

If you are aged 18 or above, you can check with the HFEA to see if your donor has re-registered as being willing to be identified to you. If he/she has, then you are entitled to request their identity which will include their full name (at birth and now if known), their date and town of birth, and the most recent address held by the HFEA. You are also entitled to any other non-identifying information that they have provided such as height, weight, colouring, a self-description written by the donor(s) (if they provided one) and a goodwill message to you. There is no charge for this service.

If you are aged 18 and over and want to exchange information and/or have contact with any donor-related siblings that you might have you can join the HFEA’s voluntary Donor Sibling Link register. There is no charge for this service.

Professional support and intermediary services (in the event of you being linked with anyone) are available via the HFEA free of charge.

You could also register with an international registry such as the Donor Sibling Registry, especially if you have some basic information about your mother’s treatment such as clinic where she was treated and, if she used sperm imported from the US, the donor code that was assigned in the US. There have been success stories even without such information especially as numbers of registrants grow.

I was conceived at a UK clinic after 1st April 2005, what rights do I have?

If you are aged 18 or above, you can ask the Human Fertilisation and Embryology Authority to provide you with the identity of your donor which will include their full name (at birth and now if known), their date and town of birth, and the most recent address held by the HFEA. You are also entitled to any other non-identifying information that they have provided such as height, weight, colouring, a self-description written by the donor(s) (if they provided one) and a goodwill message to you. There is no charge for this service.

If you are aged 18 and over and want to exchange information and/or have contact with any donor-related siblings that you might have, you can join the HFEA’s voluntary Donor Sibling Link register. There is no charge for this service.

Professional support and intermediary services (in the event of you being linked with anyone) are available via the HFEA free of charge.

I was conceived with the use of a donor outside of a UK clinic, what rights do I have?

It’s unlikely that you will have any legal rights to information unless you were conceived at an overseas clinic in a country that has laws on record keeping and rights of donor-conceived people – many do not. It’s always worth checking with the clinic direct (if you know their name) and checking from time to time to see if the clinic’s policies or the country’s laws have changed.

If you were conceived in the UK through an informal/private arrangement, then you have no legal rights at all to information about the donor.

My donor was someone known to my parent(s), what rights do I have?

The legal rules set out above still apply so your right to information depends on when you were conceived (prior to August 1991; between 1991 and 2005; or after 2005) and where (whether in a UK clinic, an overseas clinic or through an informal arrangement outside of a clinic).

I don’t know where I was conceived and don’t know for sure whether or not a donor was involved, what rights do I have?

If you are 16 or over and are in an ‘intimate’ relationship with someone (or planning to be) and want to check whether or not you may be genetically related to them, you are entitled to ask the HFEA if that is the case but you must do so jointly with the other person. This will, of course, only tell you if you were conceived with a donor at a UK clinic licensed by the HFEA. There is no charge for this service.

If you are 18 or over and conceived after 1st August 1991, you can ask the HFEA if they have any records of you being conceived with the use of a donor, subject to the restrictions explained above for those conceived before 1st April 2005. There is no charge for this service.

How many donor-related siblings might I have?

UK regulations since 1991 allow a maximum of 10 families (so there could be more than 10 children) to be formed from one donor, excluding the donor’s own family. However the donor could also have donated in other countries, where there may be either no legal restrictions or a higher legal limit on offspring numbers, or they could have also donated informally. So the actual number may be much higher (or lower) than the maximum allowed in UK clinics.

It’s thought that some ‘informal’ (i.e. unregulated) donors keep their own records and are willing to put donor offspring in touch with each other, but this is dependent on whether they are told the outcome by the recipients. Others maintain complete confidentiality. Numbers of donor-related siblings involved may be high, as media reports suggest that some informal donors are donating very regularly indeed.

What rights does the donor have to find out anything about me?

If you were conceived at a clinic licensed by the HFEA then the donor is entitled to ask the HFEA for the number, gender and year of birth of anyone born as a result of his/her donation. They are not entitled to have any other information about you released to them.

If you were conceived through an informal donation, then any information provided to the donor is wholly at the discretion of your parent(s).

If you were conceived through treatment at an overseas clinic, then it is unlikely that your donor will be entitled to any information about you but this depends on the policy of the clinic or the law of the country concerned.

ALL INFORMATION CORRECT TO THE BEST OF OUR KNOWLEDGE AT THE TIME OF WRITING (AUGUST 2018)

See also

• Fertility clinics in the UK
• Information for donor-conceived people: getting ready to search
• Information for donor-conceived people: getting ready for contact
• Support and information for donor-conceived people
• DNA testing for the donor conceived (Using commercial DNA databases to connect with genetic relatives}