UK - Anonymity to be removed from future sperm, egg and embryo donors

Main Category: Fertility
Article Date: 22 Jan 2004 - 0:00 PDT


Bulletin from UK Department of Health

Donor-conceived children gain right to information on genetic origins

Public Health Minister Melanie Johnson today announced new rules that will allow children conceived from future sperm, egg and embryo donations to access more information about their genetic origins.

The new rules will lift anonymity from future sperm, egg and embryo donors and allow donor conceived children to access the identity of their donor when they reach the age of 18.

Subject to Parliamentary approval, the new regulations will only apply to people who donate after April 1 2005. This means that the first time 18 year olds will be able to ask for the identity of their donor - if they choose - will be in 2023.

The new regulations will not be retrospective. People donating sperm, eggs or embryos before April 2005 will not be identifiable. When the new regulations do come into force, they will not impact on a donor's responsibilities to any child born as a result of their donation. As now, they will have no financial or legal obligations towards the child.

Speaking at the Human Fertilisation and Embryology Authority (HFEA) annual conference in London, Miss Johnson said:

'I firmly believe donor-conceived people have a right to information about their genetic origins that is currently denied them, including the identity of their donor. There is a growing body of opinion, which I agree with, that donor-conceived people should not be treated so differently from adopted people. Today's new regulations will align their positions, removing the major discrepancy that exists between the rights of donor-conceived people and those of adopted people.

'A number of other countries already provide donor conceived people with access to identifying information about their donor and have valued the change they have made.

'There are strong opinions on all sides of this issue but in making my decision one thing was always clear. The interests of the child are paramount. We live in an age where, as technology continues to develop, our genetic background will become increasingly important. I have listened to the views of donor-conceived people and they would like more information about their genetic origins - perhaps for themselves, perhaps for their children, perhaps because they feel the information belongs to them. That it is rightly theirs.'

It was also announced that to support the transition to identifiable donors the Department of Health would be working to raise awareness of the need for donors, to highlight the impact that donations make to people's lives and encourage donors and potential donors. This will include the funding of a national helpline that will provide information and support to people interested in donating.

Melanie Johnson also announced at the conference that the Department of Health is to undertake a review of the Human Fertilisation and Embryology Act, the legislation introduced in 1991 to regulate the field of assisted conception. The review will begin this year and will include a public consultation in 2005. She said:

'Bearing in mind the speed at which new technologies in the fertility field develop and the complex ethical issues often associated with them, the Act has stood the test of time remarkably well.

It continues to provide effective safeguards and quality assurance for research that involves embryos and for the 30,000 patients who undergo fertility treatment in the UK each year.

'However, any cutting-edge legislation, no matter how successful, at some stage needs to be reconsidered and any necessary adjustments made to ensure that it continues to be effective. My aim is to ensure that the HFE Act is well placed to continue to be effective in the 21st Century.'

Miss Johnson said that the review would be wide-ranging, although there was no intention to cover ground such as embryo research, stem cells and cloning that have been extensively and conclusively debated in Parliament in recent years.

The type of issue that she envisaged the review would address includes consideration of whether greater flexibility needs to be introduced to enable a wider range of assisted reproduction techniques to be regulated. She said: 'In doing so we will need to look at what techniques may be on the horizon and beyond.'

Notes for editors

Today's proposed changes to donor anonymity follow two years of consultation. The summary of the public consultation is at www.doh.gov.uk/consultations. After that consultation there was a further programme of work to engage with clinics and donors during which time the Department of Health heard from infertility clinics, voluntary organisations with access to patient experience and individuals including donors.

A Mailbox for comments on the review of the HFE Act is available on the Department of Health website at www.doh.gov.uk/assistedconception/index.htm

Nearly 25,000 donor-conceived people have been born since the HFEA's register began in 1991. An estimated 12,000 donor-conceived people were born before that.

Current legislation (the Human Fertilisation and Embryology Act 1990) provides that at age 18, people may ask the HFEA whether they were born as a result of treatment with donor sperm, eggs or embryo. Below that age, people may ask whether they may be related to someone they intend to marry.

The Human Fertilisation and Embryology Act 1990 was introduced following the recommendations of the 1984 report of the Committee of Inquiry into Human Fertilisation and Embryology, chaired by Dame (now Baroness) Warnock. The Act came into force in 1991 and set up the Human Fertilisation and Embryology Authority (the HFEA). The HFEA's principal tasks are to license and monitor clinics that carry out in vitro fertilisation (IVF), donor insemination (DI) and human embryo research in the UK. The HFEA also regulates the storage of gametes (sperm and eggs) and embryos. It collects data about such treatments, and provides advice and information to Government and the public.

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