Clare: Welcome Julia. For the benefit of our readers who may be new to hearing about the Human Fertilisation and Embryology Authority, please outline the current role of the HFEA.
Julia: The HFEA is the UK’s independent regulator of fertility treatment and research using human embryos – the group of cells that can lead to the creation of a baby.
We are responsible for ensuring that everyone who enters a fertility clinic receives high-quality care. Licensing, monitoring and inspecting fertility clinics enables us to do this, as well as via the free, clear and impartial information we provide to patients. You can visit our website – www.hfea.gov.uk – for information on fertility treatment and detailed reports on all UK fertility clinics.
The HFEA has a unique role in the UK healthcare landscape: the regulation of the creation of life. The HFEA was the first such regulatory body in the world and is held up as an example of excellence overseas for its innovative regulatory work.
We collect data on all treatments that take place in the licensed centres across the UK that we regulate. This information is invaluable in many ways as it can lead to developments in science and research and support service planning and delivery. And for patients who use donor eggs, sperm or embryos, the organisation provides information to any children conceived to help them learn more about their genetic origins.
Clare: As Chair of HFEA, what’s your main objective over the next 12 months?
Julia: To ensure the HFEA continues to look ahead to how our law should change to best reflect changes in society, medicine, scientific developments and modern patient care.
Clare: How does your main objective translate into the top 5 priorities for HFEA?
Julia: Firstly, we need to continue to make sure that clinics are able to offer safe fertility treatment during the ongoing Covid-19 pandemic. Fertility treatment was the first ‘non-essential’ treatment to re-start after the first lockdown and we are really grateful for clinic staff working so hard to continue to offer safe treatment to patients since then.
A new law has just come into force that both increases the length of time for which sperm, eggs and embryos can be stored and also makes some changes to the process that patients and donors storing their eggs, sperm and embryos must follow in order to do so. This is good news for patients, but we are working hard with clinics to make sure the new law is understood. This is especially important for those who might have stored their eggs or sperm many years ago before undergoing chemotherapy as the new law now requires them to get in touch with their clinic every 10 years.
Another big moment will take place in 2023 when the first donor-conceived children born since the rules changed in 2005 will be able to access identifying information about their donor from the HFEA. This will have huge implications for many families, and we want to ensure we can manage these big changes.
The HFEA wants to ensure that fertility issues, including for example, a better understanding of why black and some ethnic minority groups can have poorer outcomes when accessing fertility treatments, remains high on our agenda. Providing impartial patient advice and information will also be a priority.
Lastly, we are working with fertility laws that are mostly over 30 years old. So much has changed since then and it is a key priority of mine to make recommendations to the Government on how this law could change to better improve patient care and our ability to regulate effectively.
Clare: How do those key priorities directly affect patients undergoing fertility treatment?
Julia: Each patient going into a clinic should know that they are being offered safe and effective treatment. We have a robust inspection system and look at a wide range of issues from the safety of the clinic to the information it provides patients. The priorities I have outlined will ensure this is continued and enhanced by the changes we would like to see.
Clare: Given that the Human Fertilisation and Embryology Act has recently reached its 30-year milestone, is it time to modernise it? If so, which areas of the Act do you wish to focus on?
Julia: Much of the fertility law has stood the test of time remarkably well and we can, and do, regulate effectively with the tools we have. However, we need to update and future-proof the law so we can continue to act in the best interest of patients for many more years to come.
Looking ahead, the HFEA has begun work to identify where the law needs to be modernised further, making it better suited for the issues of today and tomorrow.
There are three core areas we want to prioritise and these are: patient protection, scientific developments and consent, data sharing and anonymity. However, it is important to note that the decision to change the law is for Government and ultimately Parliament to decide and not the HFEA.
We will be running a consultation later this year and it is really important we hear the views of professional and patient bodies in addition to interested patients. The consultation will inform the recommendations that the HFEA will submit to the Department of Health and Social Care around the end of the year.