NGA and Brilliant Beginnings were delighted to attend the Progress Educational Trust’s Annual Conference 2021, titled “Reproducing Regulation: Who Regulates Fertility and How?”. PET has an excellent reputation for thought-provoking events combining law, science and ethics and this one was no exception.
The event caters for a large number of professionals and roles and our own Luke Williams, a solicitor at NGA Law, Kelly Wilson, a paralegal at NGA Law and Laura Clarke, a nurse and client manager at Brilliant Beginnings, attended online.
All of the speakers offered insightful perspectives on their areas of expertise, but each took something different away from this.
Julia Chain is the Chair of the Human Fertilisation and Embryology Authority (HFEA), the regulatory body which oversees fertility clinics operate. In her opening speech she set out her vision for how fertility treatment can be regulated with law that is now 30 years old (first introduced as the Human Fertilisation and Embryology Act 1990, and later updated through an Act of the same name in 2008).
The main issue with the legislation is that it makes no reference to patients, patient safety, or outcomes – in Julia’s view these should be at the centre of what the HFEA does. She identified three areas that need to be improved, but through “selective modernisation” rather than “wholesale rejection” of all of the existing law.
Fertility-related healthcare is unlike many other areas of healthcare, since it is mostly provided by the private sector with patients funding their own treatment. Patients are often stressed and vulnerable when they have to make decisions about whether to pay for “add ons” offered by clinics, such as assisted hatching. This can leave them vulnerable to exploitation. In addition, the HFEA does not regulate all aspects of the fertility treatment process, which means that when things go wrong lots of different regulators have to be involved and work together.
This is a cornerstone of the current legislation, and requires clinics to ensure that sperm, eggs and embryos are only used for purposes that their providers have agreed to. However, the process of taking consent that clinics have to follow are more complicated and costly than they need to be. Similarly, there are very restrictive rules on information sharing that can cause problems if patients move between services, such as from IVF to Maternity.
There were some big conversations about treatment add-ons, and likewise the advances in health research over the last 10 years impacting on the fertility sector. Covid-19 seems to have put high quality research on the map, with more and more people looking for strong evidence to inform their choices.
One of the big things in recent years for the fertility sector is the 2019 Consensus statement for the responsible use of treatment add-ons in fertility services. This states that treatments that have no strong evidence of their safety and/or effectiveness should only be offered in a research setting, with patients not being charged extra to take part in research, including clinical trials.
In reality, most health research takes place within the NHS setting, however as two thirds of fertility treatment is self-funded, there is real scope for more research to be undertaken within private settings, which doesn’t have a knock on cost implication to their patients.
The HFEA traffic light ratings for treatment add-ons are based on evidence from high-quality randomised controlled trials (RCTs), and although not every single add-on is included, over time this will be updated as the evidence base grows.
As our bread and butter, we were very interested to listen to the brilliant speakers talking about ‘all families great and small’. There was a very informative talk around co-parenting which emphasised the importance of putting in place co-parenting agreements. We can help you with this.
Interestingly, there was also a question regarding polyamorous couples and how family law applies family units with more than two ‘parents’. We have experience in dealing with this and would be happy to advise.
Professor Emily Jackson gave a very informative talk on ‘What is a ‘Mother’ in UK Fertility Law. This gave very good insight into the social, practical and legal definitions of what it is to be a mother in UK law and how these can be conflicting with a family’s reality. In contrast, how a father is defined both socially and in UK law. We wrote a similarly titled article – when fathers are mothers – for The Review.
We were pleased to hear from Katherine O’Brien that the law for single parents is evolving (with surrogacy now being open to single parents) but that there is still work to be down to break down social barriers which still exist for single parents. We advocate passionately for modern families to reflect the reality that they really do come in all shapes and sizes.
There were also some big discussions around donor anonymity and even the suggestion of a surrogacy register, which highlighted to us the importance of talking to children about their origins. You can find some information and surrogacy resources on Brilliant Beginnings website.
We agree with the sentiments of the day where a salute was given to those who have been campaigning passionately over the past 30 years and a nod given to the fact that our laws and regulations are seen as a global gold standard. Whilst we remain at the forefront of fertility law, to be at the cutting edge takes hard work and a multi-disciplinary approach. Thirty years on, is a good time to reflect and whilst much remains fit for purpose, selective reform is needed.
We will continue to do our bit and encourage others to get involved and for patients and practitioners to have their say when it matters.