11 January 2016
Less than a year after the UK legalised mitochondrial donation, this second session of the Progress Educational Trust's annual conference, chaired by Professor Bobbie Farsides, was an opportunity to get up to date with developments and to discuss the future of mitochondrial donation. As it transpired, the session became something of a celebration of the passing of the law – the only one of its kind in the world.
Professor Doug Turnbull, director of the Wellcome Trust Centre for Mitochondrial Research in Newcastle, centred his presentation on potential benefits to patients, and shared insights from looking after affected families over more than 30 years. Although the understanding and diagnosis of mitochondrial disorders has considerably improved over the years, Professor Turnbull explained that there is still no cure available, so it is crucial to 'give these families potential choice' to prevent the transmission of these disorders.
Using the example of two 'particularly tragic' family situations he had encountered during his career, in which multiple members were affected by maternally inherited mitochondrial disorders, he explained how mitochondrial donation could have enabled some female family members to avoid miscarriages and have healthy children. There are already several reproductive options available for women affected by mitochondrial disorders, but mitochondrial donation, Professor Turnbull concluded, would constitute a new option for those who have a very high mutation load and who cannot use prenatal or pre-implantation diagnosis. Would this mean that women with a lower mutation load won't be allowed to use mitochondrial donation? And what will happen to the women with a very high mutation load who are entitled to use the techniques, but are already affected by the disorders or are likely to become ill? These may be important questions for patients but so far remain unaddressed in the debates.
The second speaker, Sally Cheshire, chair of the Human Fertilisation and Embryology Authority (HFEA), argued that the UK was the best place for mitochondrial donation. Besides being host to a strong group of specialised scientific experts in this field, the UK has also demonstrated its capacity to engage with the public and patients through consultation exercises. Moreover, in addition to our parliamentary decision-making process, as well as an independent regulatory system – the HFEA. This system 'gives people confidence in allowing innovation to take place', she suggested.
While recalling the milestones of the regulatory process, Cheshire emphasised the key role the HFEA had played in collecting evidence and informing both the public and MPs. The scrupulousness of the HFEA and its neutral position in the debate were also essential. The HFEA's safeguards and strict control regime for licencing and treatment procedures are all ultimately about preventing the suffering of the patients and their children, she added. If the techniques are available, said Cheshire, 'why would you prevent people from having that choice?'.
The importance of giving people choice was also central to the final speaker's argument. Viscount Matt Ridley, science writer and member of the House of Lords, explained why, as a Conservative, he believed that 'families should be free to choose mitochondrial donation for their children' if it was what they wanted. He provided a very personal and lively account of how he and numerous representatives of organisations – such as PET or the Lily Foundation – had made a long and concerted effort to inform and convince people that this legislation should be passed through the House of Lords. There had been absolutely no rush in this debate, he said. But he said he would have preferred a more appealing phrase to describe the new techniques, finding three-parent baby' highly misleading and 'mitochondrial donation' too technical and incomprehensible.
Viscount Ridley concluded by pointing out what he felt were crucial elements to bear in mind for future similar debates, including preparing the ground in advance – by providing the evidence and informing the media – emphasising the benefits rather than the risks, and 'to remember to appeal to the heart as well as the head'.
While all speakers praised the legalisation process and the benefits of mitochondrial donation, the questions from the audience reflected more scepticism and highlighted the limits of the techniques and the issues still at stake. This included questions about the follow-up of future children conceived with these techniques, the access criteria that apply once it's available, the freedom of affected women to refuse to use the techniques, and the possible future removal of anonymity of egg donors for mitochondrial donation.
Several audience members were also interested to know when and how many women, in the UK and abroad, would benefit from mitochondrial donation. Professor Turnbull estimated that ten to 20 children could be conceived per year. However, the procedure was not in place yet, he explained, as his team still had to perfect the science and to obtain a licence from the HFEA. They were also in the middle of discussions with the NHS in order to determine whether the treatment could be publicly funded. While the financial aspects of the techniques were briefly evoked during the discussion, it is a shame that the panel did not address them in more depth. As the Department of Health have estimated that the costs of a successful treatment to be in the region of £80,000, it is worth discussing further whether it would be the parents or the taxpayer who should foot the bill.
The final question from the audience was about the lessons learned from this process. Interestingly, Professor Turnbull said he wished he had engaged more effectively with patients after the law was passed. It seems that, after being centrally involved in the debate, patients may have felt disappointed by the lack of subsequent follow-up. This raises many questions about the best ways to involve and support those interested in new policies, how to realistically manage their hopes and expectations, and how to keep them enthusiastic and satisfied – even if few may personally benefit from new techniques or treatments.
PET would like to thank the sponsors of its conference – Merck, the Edwards and Steptoe Research Trust Fund, Ferring Pharmaceuticals, the London Women's Clinic, the Medical Research Council and Wellcome Trust.