The laws governing what donor-conceived people can find out about their donor are complex. Here we set out an outline of the main provisions. If you are interested in the detail, you can consult the Human Fertilisation and Embryology Act 1990, as amended by the Human Fertilisation and Embryology Act 2008, and the Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004 . You can also access an article which sets out the legal basis for reform, here.
The Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004 (the “disclosure regulations”) say that, when a person reaches the age of 16, a person can require the Human Fertilisation and Embryology Authority to tell them whether the information the HFEA holds indicates that they were donor-conceived, and to tell them if there are other people conceived by the same donor, how many there are, their sex and the years of their birth, together with information about the donor. But the HFEA cannot tell them the name of the donor, nor give them any information which might enable the person to identify the donor. At the age of 18, a person can require the HFEA to tell them that information and also provide them with the donor’s name, date and place of birth, appearance and last known address – so long as the donor provided that information after 31 March 2005.
The disclosure regulations were intended to bring an end to donor anonymity and to give donor-conceived people the right to identify their genetic parent. But the regulations are flawed: a donor-conceived person will only be able to exercise that right if they know that they are donor-conceived and they will only know that if someone tells them – or they find out, as happens increasingly often, when they sign up to a DNA analysis service.
Bodies concerned with the welfare of donor-conceived people generally agree that donor-conceived people should be told about their conception, and should be told at as early a stage as practicable. Anecdotal and research evidence show that a large proportion do not tell their children – research conducted in 2016 (Parental disclosure of assisted reproductive technology (ART) conception to their children: A systematic and meta-analytic review (Tallandini, M.A., Zanchettin, L., Gronchi, G., & Morsan, V.(2016), Human Reproduction 31, 1275–128)) concluded that, in the case of children under 10 years old, the probability of disclosure was less than 50% and that
The high number of non-disclosing parents treated by donor ART [Assisted Reproduction Technology] points to an underestimation of the medical risks for the offspring (the presence of genetic illnesses, inadvertent consanguinity) and suggests that these children’s rights may not be given due consideration.
Donor-conceived people who are not voluntarily told by their parents typically find out the truth either through unplanned disclosure during moments of family crisis or through taking a DNA test provided by the one of the web-based direct-to-consumer services. Often this comes as a great shock and causes distress, anger and alienation within the family. Where the subject is older and their legal parents have died or are perceived as being too frail to deal with the question, they are often left with distressing feelings and unanswered questions. We know of many such stories. You can find some examples under the Stories tab in the main menu on the home page of this website.
We believe that donor-conceived people should be able to know the truth about their conception, and identify their donor, without relying on anyone else. Otherwise the right to know is not really a right at all. It depends on their legal parents choosing to tell them about their conception and if they do not, the donor-conceived person does not even know that something is being kept from them. The system of registering births and issuing birth certificates needs to be reformed so as to ensure that the truth is available to the donor-conceived person independently of anyone else’s wishes.
Submission to the Law Commission
In 2021 the Law Commission of England and Wales will undertake its 14th programme, where it considers what changes should be made to the law. To see more about our proposals for reform, go the Our Proposal tab on the home page of this website. To see our full submission to the Law Commission, click here.
Birth Registration Reform Group UK 