The future of fertility law: what must change and when?
Dr Kirsty Horsey
Progress Educational Trust22 January 2019
The final session at the Progress Educational Trust's annual conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?' continued the theme of looking to future reform of fertility law, as had the keynote address given by Sir James Munby. Chaired by Fiona Fox, on her last outing as the Chair of Trustees of PET, the session ranged from personal experience, through issues arising in legal cases and socio-legal research, right to the idea of 'ripping up the rulebook' and starting again.
Professor Ellie Lee from the University of Kent opened the session by asking 'Who needs section 13(5) of the Human Fertilisation and Embryology Act?' She told the conference about her research concerning the change of wording in the legislation between the 1990 and 2008 HFE Acts. Whereas the 1990 Act asked clinics deciding on whether or not to allow treatment to consider the putative child's 'need for a father', the 2008 Act amended that to a consideration for the need for 'supportive parenting'.
From 2010-2012, Professor Lee and others conducted empirical research interviewing clinic personnel (including doctors, fertility nurses, counsellors and embryologists) at about one quarter of the clinics operating at that time. They asked what staff thought about the requirement to consider the welfare of the child generally, what this meant to them in practice, and what they thought about the change to the wording of the law.
One reason behind this was the political and public debate generated at the time the legislation was changed. Professor Lee pointed out that the change in wording – or more accurately, the removal of the 'need for a father' provision – took up one tenth of the parliamentary debate time for the whole 2008 Act. This was accompanied, as many will remember, by extensive media and public comment, often lamenting the supposed removal of fathers from the equation and what this meant for society.
There was very little discussion of what 'supportive parenting' actually meant (possibly to be expected if relying on such a nebulous term), or any critical reflection outside of academia on the assumption that 'an imaginary child's welfare should be assessed in clinics' prior to the child's existence.
Professor Lee and her colleagues found that clinic staff 'did not in any way reject the salience of the welfare of the child provision' but that there was some ambiguity in practice. The research team found that there was a strong presumption to treat both before and after the change: 'What clinic staff want to do is treat people, to help them have kids'. No general groups were found to be denied access on the basis of welfare concerns, though there were small numbers of individual and idiosyncratic examples where concerns were raised – yet staff still attempted, where they could, to resolve the issues.
There was, instead, a 'search for meaning' in relation to supportive parenting, despite the attempt in the HFEA (Human Fertilisation and Embryology Authority)'s Code of Practice to give guidance. The only 'issue' highlighted was the treatment of single women and a real concern to ensure they would be 'supported' in some way when it came to having a child – though this was not very different to how it had been before.
Concluding, Professor Lee told the conference that more often than not, this search for meaning was what guided clinic staff. It instilled in them a sense of 'moral responsibility to the social whole' rather than to the prospective parents. So, answering the question 'Who needs section 13(5)?', the answer turned out to be that it was more beneficial for clinic staff than anyone else.
The next speaker was Natalie Smith, mother of twins via surrogacy and Chair of Surrogacy UK's working group on legal reform. This group has now published two reports on surrogacy in the UK with recommendations for law reform. The central tenets of the recommendations are that the law (currently under review by the Law Commission of England and Wales and the Scottish Law Commission) should retain its basis in altruism and not move towards a more commercialised model.
In addition, the reports recommend that laws on legal parenthood should be reviewed, to reflect the concerns of both surrogates (as found in two surveys used for the reports) and intended parents that the wrong people are currently recognised as the legal parents at birth. The proposal is that at-birth parenthood for the intended parents should be brought into law (possibly with some pre-conception tests), to better reflect the reality of surrogacy arrangements, the identity of the children and all parties' best interests.
James Lawford Davies, a lawyer specialising in reproductive and genetic technologies, told the conference that most litigation in his nearly 20 years working in the field had been to do with consent. He spoke about a series of cases raising consent issues, including: Paul Fielding, the fertility doctor who was sentenced 18 months for assault for 'implanting' women with water rather than embryos; Diane Blood, who had no formal consent from her husband prior to his death for the posthumous use of his sperm; Beth Warren, who had been granted a declaration by the High Court to use her late husband's sperm in a situation where 'some, but not all' consent had been given; Natallie Evans, whose ex-partner withdrew his consent to her use of embryos they had created together; and numerous others.
He also discussed the long series of cases that had arisen from the mistakes made with consent forms since the 2008 Act. Noting the 'extent, breadth and frequency of litigation' in relation to consent as a whole, he said this was testament to the 'incredible complexity' of the legislation and the law's prescriptiveness in relation to many common situations, combined with a simultaneous inability to cope with more complex ones.
Lawford Davies went on to talk about confidentiality – the 'second most popular question from clinics' – and criminality. Noting that there are good reasons why the legislation deals with confidentiality in the way it does, he also called the provisions 'incredibly draconian' and highlighted that common law principles and other rules such as GDPR operate on top of these as well. However, there are 23 exceptions to the rules, complicating matters further. On criminality, he concluded that 'society should think very carefully about criminalising medical practices', noting that the HFE Acts contain 'lots' of criminal offences and that it is 'remarkably easy to commit a crime in an IVF clinic in the UK'.
Professor John Harris concluded the session asking whether we should consider simply 'ripping up the rulebook', and stating that this was something he usually favoured doing in any context. However, he went on to say that he supports the existence of the HFEA and the legislation, noting that it gives the opportunity for 'fantastic science' and 'lots of children born from IVF and related procedures'.
Getting more specific, he went on to discuss genome editing and the 'spurious objections' that are raised against it. He said these were based on three fallacious arguments. First, that it might affect future generations (and that the germline is somehow inviolable). Second, that there is a risk to future generations. Third, that it is impossible to obtain the consent of future generations.
Professor Harris pointed out that such concerns could apply to all assisted reproductive technologies and, in fact, all reproduction – including sexual reproduction. Balancing this against the six percent of children who are born each year with serious genetic defects, he said there should be no such thing as a precautionary approach and that 'therapy delayed equals therapy denied'.
In his concluding remarks, he said that if sexual reproduction had been 'invented', it would never have been licensed – pointing out that despite this, it still remains the 'gold standard against which all else is measured'. He added that consent in this context was 'irrelevant' because there were no relevant people in existence capable of giving or withholding it.
The audience was then invited to ask questions, which mainly focused on the welfare of the child assessment. First, a question was asked about whether patients ever felt discriminated against by the welfare considerations. Professor Lee answered that this had been written about after both the 1990 and the 2008 Acts, and also that the inclusion of the provision had been part of the 'political bargain' emerging from the original parliamentary debates, where – she pointed out – we should 'remember how close the whole thing was to failing'.
Professor Lee agreed with Professor Harris's idea that it is impossible to judge in relation to a child that does not exist, but also pointed out that her study showed that welfare considerations were not the main reasons that treatment was denied in clinics. A counsellor in the audience gave a 'shout out' for the welfare of the child provision, explaining that despite the fact that being asked to conduct such an assessment has 'always been very uncomfortable', because everyone is subject to the same provision it 'gives [counsellors] the opportunity to ask everyone concerned if there are any problems'.
Natalie Smith pointed out that despite the low risk of surrogacy arrangements 'going wrong' and much surrogacy requiring clinical intervention (and thus a clinical welfare assessment), the scrutiny of surrogacy arrangements is in fact higher, given the additional welfare checks that need to be made after birth in relation to applications for a parental order. The solicitor Natalie Gamble, speaking from the audience, agreed. She added that where there had been even a light-touch section 13(5) assessment, there was a case for removal of post-birth Cafcass reports.
Overall, the session was lively and thought-provoking. It is clear that there are aspects of the existing law that many are not happy with, and given that the 2008 Act is now a decade old (and the still-existing provisions of the 1990 Act are nearly 30!) perhaps it is again time for some review of the law, including the welfare and consent provisions as well as how parenthood is determined following surrogacy.
PET would like to thank the sponsor of this session, the Edwards and Steptoe Research Trust Fund, and the other sponsors of its conference - the Anne McLaren Memorial Trust Fund, the European Society of Human Reproduction and Embryology, JMW Solicitors, Ferring Pharmaceuticals, the European Sperm Bank, the London Women's Clinic, Vitrolife and the Institute of Medical Ethics.
Reproduced with permission from BioNews, an email and online sources of news, information and comment on assisted reproduction and genetics.