Donating embryos for research – Human Fertility and Embryology Act to be updated
13 Apr 2023
IVF is only possible thanks to years of work by scientists, and those that have benefitted from treatment can support this research by choosing to donate their precious embryos. The Human Fertility and Embryology Act is being reviewed to improve the laws that regulate IVF. Making the paperwork around embryo donation easier to understand would encourage more people to contribute to future research and improved treatments.
Consultation on the Human Fertilisation and Embryology Act
In the early days of IVF, Bourn Hall created the first ethics committee to discuss some of the concerns that were arising from what was then a controversial new treatment.
IVF is now highly regulated according to the Human Fertilisation and Embryology Act, which was first made law in 1990. Although some updates have been made the act is showing its age.
We now have different views on what makes a family and ancestry websites have made anonymity more problematic, and there have been developments in technology and treatments that were not envisaged in 1990.
In this video patient Natalie Silverman, counsellor Jackie Stewart and Director of Science Martyn Blayney talk about the difficult decision of what to do with frozen embryos.
One aspect that is being reviewed is the area of research using donated embryos. To understand the complex process of human reproduction requires knowledge of human embryos, but the process for gaining consents – which involves patients reading many documents and multiple signatures – is no longer fit for purpose.
To improve treatments and reduce pregnancy loss this research is vital. An HFEA survey in 2016 showed that 58% of patients that have finished their treatment would be willing to donate their remaining frozen embryos to support this work.
It is hoped that reforms to the bill will make it easier to donate embryos for this valuable research.
Bourn Hall calls for the paperwork to be simplified
Dr Kay Elder is a research scientist at Bourn Hall, the birthplace of IVF treatment, and one of the few clinics that provides embryos for research. Kay participated in the recent PET event ‘Your chance for change: Shaping the UK’s Fertility and Embryo Law’.
At the meeting she explained that “research is the bedrock for the development of new techniques in fertility” and “without donation, some of the treatments we take for granted today wouldn’t even exist”.
Embryos are very precious and patients have an emotional attachment to them, so donation needs to treated sensitively.
Currently the law requires that consent must be to a specific research project and Kay explained that if the project didn’t go ahead for some reason precious embryos may be wasted.
The process is also quite off-putting, as the consent documents are written in legal jargon and if the embryos use donated sperm or eggs the donor also needs to give consent – which is almost impossible to do in the real world.
To enable this invaluable research and make it easier for patients to donate, Kay recommended that the law should be changed to enable “the process of donating embryos to research to be simplified/streamlined”, or even centralised in the form a research embryo bank.
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