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The view of the UK regulator (HFEA)

Well the HFEA is twenty-five years old this year and that makes us the oldest IVF regulator in the world. And probably still one of the few. And what I think what is unique about the British regulation is that the parliament sets legislation and in so doing set up a regulator. And as a regulator we have quite extensive, powers to make policies, to make new rules as we go along.
So although the legislation is quite firm on some issues it allows us as the regulator to respond to scientific developments, to changing the law, to changes in society at large and respond to those in a way that can, maintain that sort of monitoring of the doctors and scientists involved in this sector. But also maximize the quality of the treatments for the patients. So the benefits of going to a clinic if you are having treatment with donor sperm are that the donor is screened for infectious and inherited diseases. That their family history is taken so have a good knowledge of the medical history of that donor which is really important to recipients.
The other thing that it allows for is the knowledge that, that donor hasn’t donated to more than nine other families. There is a limit of ten families from regulated sperm donation. And talking to the people who’ve been born through sperm or egg donation they’ve said that they don’t want to feel that there are maybe hundreds of half-siblings out there that they could be related to. And having a smaller number which comes from restricting donation to ten families is something that they find comforting. I think the other thing that, you can be reassured by going to a clinic, is that support and information that is central to that kind of treatment setting.
Knowing what you are getting into, knowing what the legal issues are, knowing that you will be the legal parent of that child, not your donor. So those are all things that appeal to people in regulated treatment. And by contrast those are the things that are missing when you go through unregulated treatment. That the donor could be the legal father. That they maybe financially responsible, for the child who is born. But I think, and you have seen this more with some of the recent media conversations in the UK about, unregulated sperm donors is that there can be some quite predatory people out there who have who don’t have altruistic intensions in mind.
They are probably the few but I think it is important for people to be able to distinguish between one type of donor and another. And to be very, very insistent upon finding information about that donor and what their motivations are and what kind of agreement they are looking for after the child is born. What kind of contact, if any, and what kind of, interest will they have in that child’s life as they grow up. So, I can see the appeal for some people of unregulated, treatment. It is cheaper. And a much less clinical approach to parenthood if you like.
But what-, we are always saying to people just make sure you weigh up the pros and cons and know what the risks and benefits of each approach are so that you can make an informed decision. I think for us that is the most important thing ultimately. One of the features of regulated sperm donation is that, the legislation is very clear that people can only access identifying information about their donor until they reach the age of eighteen.
And although there is non identifying information available both to prospective parents and to their children as they are growing up, a good will message from the donor, information about their family and why they wanted to donate there are quite extensive restrictions around how information is controlled and released to the people who have a right to access it. And that is for very good reasons, arguably, that this is extremely confidential information. But it is also not a feature of unregulated treatment. So there is a much more easy flow of information about a donor and potential contact between a donor and their, donor-conceived offspring before the age of eighteen and that is appealing for some people.
I think again, what’s, potentially lacking is the support and information for people. We have a counselling service at the HFEA where anybody who’s reached the age of eighteen and their donor is identifiable can come to us and say I would like to get contact information about my donor but I would like to think through the consequences of making contact with him or her. I would like to perhaps have someone with me there when I meet them and we can offer all that kind of support and information. And it is really important that if people in that kind of situation who have done unregulated sperm donation try and think through that stuff before they take those steps.

The Human Fertilisation and Embryology Authority (HFEA) is the UK’s independent regulator dedicated to licensing and monitoring fertility clinics and research involving human embryos.

Established in 1991, it regulates clinics and laboratories according to the Human Fertilisation and Embryology Act 1990 and the European Union Tissue and Cells Directive.

The 1990 Act ensured the regulation, through licensing, of the creation and use of human embryos in the laboratory, the use of donated embryos and gametes (eggs and sperm), as well as their storage.

The Act also requires the HFEA keep track of every IVF treatment carried out and a database relating to all assisted fertility cycles and the use of donated sperm and eggs.

In this video, Juliet Tizzard briefly recounts the history of the HFEA and then describes its role is in regulating fertility services, including their support for scientific advances in the field of assisted fertility. She then explains the benefits of going through a licensed clinic rather than obtaining sperm outside of the regulated framework.

Useful services provided by the UK regulator

Choose a fertility clinic – a useful search tool to find your nearest HFEA-licensed fertility clinic as well as their services and live birth rates.

Apply for information – the HFEA holds information about all fertility treatments that take place in the UK. Donor-conceived people can apply for information about their donor.

Donor Sibling Link – donor-conceived people are able to get in touch with others who share the same donor, their genetic siblings.

Patient information – the HFEA website has information on fertility treatments, freezing and storage options, as well as information on how to understand live birth rates and how to find the most suitable clinic.

Join the discussion
Please take a moment to review the above links. Whether you live in the UK or not, what do you think about the role of a regulator in the field of assisted fertility? Do you think it’s important to have one? Do you have experience of other regulatory frameworks?

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