The HFEA at 30: Is society ready for the law to change?
by Sally Cheshire, HFEA Chair
In our first HFEA@30 blog our Chief Executive, Peter Thompson explained how the Warnock Committee's 1984 report recommended that Parliament introduce a body to regulate the principles and limits needed to allow fertility treatment and human embryo research to take place safely and ethically in the UK, and so in 1991 the HFEA was born. I've served the Authority for half of its 30-year history and have seen dramatic changes in science, clinical treatment, care and support and the notion of family in modern society during that significant period of the HFEA's history.
Mary Warnock could not have foreseen the issues I have been interviewed about in recent weeks - internet sperm donors, the rise of social egg freezing, and a sensitive documentary about a trans couple seeking to become parents via surrogacy. And yet, in many ways the HFE Act of 1990 and its 2008 update, have stood the test of time as new and complex ethical issues emerge. We have continued the Warnock Committee's original stated aim of "a reasoned discussion of the issues" and "a high standard of debate on matters which are of deep concern to the public." IVF now happens globally but the world looks to the UK model as the blueprint for responsible innovation, allowing scientific and clinical innovation to flourish but within a carefully regulated framework which maintains public trust.
So, amidst the clamour for a change in the law on several fronts – the 14-day limit for keeping embryos, the storage period for gametes, surrogacy arrangements and adequately protecting patients in today’s competitive and commercial fertility market, is UK society really ready for the law to change? And if it does, to quote Mary Warnock, what will emerge as “a coherent set of proposals for how public policy should respond to a range of developments which many people will not wish to participate in, but which others find entirely acceptable?”
The UK’s fertility sector in the last 30 years has increased IVF birth rates from 9% per embryo transferred to 23%, delivered a dramatic public health success story in reducing multiple births from 1 in 4 IVF pregnancies to 1 in 12, and under the HFEA’s and my leadership, has implemented an unprecedented change in culture to put patients at the heart of safe treatment, care and emotional support. Our relationship with clinics is open and robust, but we have reached the limits of our regulatory powers.
That is why the HFEA’s 30th anniversary is a real opportunity to begin the public debate towards a consensus about legislative change. Personally, I would want to see improvements in three key areas in any new Act - firstly, the embedding in the law of responsible innovation and quality of care, which will offer patients the advantages of future scientific developments we haven’t yet discovered whilst better protecting them: the HFEA ought to be able to permit the use of new techniques or add-on treatments to basic IVF only where they have been proven to be safe and effective. Patients also need honest evidence-based information about every aspect of their treatment and a genuine understanding of success rates which are meaningful to their own personal situation.
Secondly, I believe patients need economic protection in a competitive and commercial fertility market including the HFEA having the power to regulate prices and use a wider range of economic sanctions than the few clunky legal levers we have now of removing licences or closing clinics, a situation where the bar is high to take action and the HFEA needs a range of regulatory tools to tackle failures in care. Our work with the Competition and Markets Authority and the Advertising Standards Agency supports progress on that front.
Finally, the rules around consent and anonymity - keeping patients’ fertility treatment details confidential from all other clinical treatment - belongs to a different era and prevents data sharing and effective research. We would like to be able to tackle more of the big public health questions about fertility treatment and ensure our research and the treatments we regulate reflect current notions of the modern family and deliver equitable access and fair funding.
As I step down as HFEA Chair, we can be proud of the pioneering work which happened in the UK and has brought 10 million IVF babies into the world. Despite the sensationalist media stories about the slippery slope towards designer babies, most patients are just like Louise Brown’s parents who “just wanted a baby.” Don’t we owe all the patients who come forward to use our services the best our sector and any new law can offer them?
Mary Warnock wanted “as many viewpoints as possible to be brought to bear on the morally sensitive issues before us.” Other writers will pick up on specific themes as we progress through the year and we hope you will engage in the upcoming public debate we are launching through HFEA@30. Thank you.
Review date: 30 September 2023