Imagine that your only child dies in their 20s but has frozen their gametes before they died. Should you be able to use their gametes even though they have not said what should happen to their gametes after death? This was the question heard by the High Court in June 2015, and Ouseley J dismissed a claim against the decision of the Human Fertilisation and Embryology Authority’s Statutory Approvals Committee that the frozen eggs of AM, who had died in 2011, could not be exported to the United States for implantation in Mrs M (AM’s mother). While this is not the first case to raise issues relating to access to stored gametes (R v. Human Fertilisation and Embryology Authority, ex parte Blood [1997] 2 All ER 687, CA; Evans v. Amicus Healthcare Ltd [2004] EWCA Civ 727; Evans v. UK (2007) 46 EHHR; L v. Human Fertilisation and Embryology Authority and another [2008] EWHC 2149 (Fam)). 728), if the export had been permitted it would apparently have been the first surrogacy case involving a mother and her deceased daughter’s eggs. It is thus important to understand what was being requested, the decision, and the implications if the export had been approved.
The Facts
AM died aged 28 on 12 June 2011, having been diagnosed with bowel cancer in November 2005. While in remission in 2008 AM’s eggs were removed, frozen and stored at the IVF Centre, Hammersmith. She signed a form from the Human Fertilisation and Embryology Authority (HFEA) in which she consented to her eggs being stored after her death (see Sched. 3 paras. 1(1), 2(2), 3(1) and 8(1) of the amended Human Fertilisation and Embryology Act 1990). AM did not, however, indicate how her eggs were to be used after her death (see Sched. 1 paras. 2(1), 3(1), 5(1)-(3) and 6(1)). Thus, once she died in 2011, her eggs could only be stored for the maximum period she had specified but could not be used.
Her parents, understandably perhaps, were not happy that their only child’s eggs were to be stored but not used, and claimed that AM had ‘expressed a strong wish’ [2] to her mother that one or more of the stored eggs should be fertilised, implanted in Mrs M (known as IM in the judgment), who would raise any child with Mr M (MM in the judgment). In order to fulfil this ‘strong wish’, Mr and Mrs M had to apply for a Special Direction (which permits modifications of statutory requirements) from the HFEA that would allow them to export AM’s eggs to a treatment centre in New York which was willing to treat Mrs M. The Statutory Approvals Committee of the HFEA refused to grant such a Direction three times (November 2013, March 2014, and August 2014), and Mr and Mrs M challenged this final decision on three grounds:
- the Committee’s appraisal of the evidence was irrational,
- the Committee had not distinguished between its General and Special powers of Direction, and had used its General rather than Special discretionary powers, and
- the decision was a disproportionate interference with Mr and Mrs M’s Article 8 ECHR rights.
Evidence of what AM wanted
(1) In 2006 AM had a conversation with a consultant gynaecologist about Mrs M carrying her child as a surrogate if AM’s womb was damaged following radiotherapy, but not about exporting her eggs or what to do if she died. Surrogacy was discussed in a ‘very hypothetical way’ with AM [28], but not the implications of Mrs M being a surrogate, and nor were there conversations with Mrs M about surrogacy, its implications or risks. Mrs M stated that AM ‘wanted her own genes to be carried on’ [29], and that she had discussed being a surrogate with AM’s eggs in 2008 on the way to IVF Hammersmith for egg removal.
(2) In 2008 AM completed three of the IVF Hammersmith’s consent forms; (i) a treatment consent form relating to the retrieval of eggs, (ii) a specific consent form to storage (WS), and (iii) a form consenting to egg freezing. With regard to the WS form, AM indicated that her eggs should ‘continue in storage for later use’ if she died or no longer had the capacity to decide for herself.
AM only signed these three forms, and was not offered and did not ask for any other form, even though the statement above the signature line on the WS form said that “There is a separate form on which you can say how you want your eggs to be used. Your eggs can only be used if you have also completed a storage form” [27].
Nevertheless, Mrs M said she was ‘absolutely clear that [AM] wished her eggs to be collected, stored and used to conceive a child, and that … she had also considered what should happen if she were to die, and that she wanted her eggs to be used to conceive a child after her death’ [31]. She said that on the day AM signed the consent form they had discussed Mrs M being her surrogate and she was ‘certain that this was her expectation of how her eggs could be used after her death’. Thus, she was ‘absolutely clear that [AM] believed she had signed all the necessary forms to authorise this, and that she would be devastated to think that her eggs cannot now be used because of a paperwork issue’ [31].
(3) AM’s cousin who was pregnant when she visited AM in hospital in 2009, said AM told her ‘I have already got my babies, they are just on ice’ [32], and looked to Mrs M to confirm this. This was said to be confirmation of the understanding between AM and her mother about what would happen if AM could not get pregnant herself.
(4) AM’s condition deteriorated in January 2010, and she accepted that she would not leave hospital nor carry a child herself. She told Mrs M that she wanted her to carry ‘my babies. I didn’t go through IVF to save my eggs for nothing, I want you and dad to bring them up, they will be safe with you’ [33]. AM ‘was clear that she wanted her genes to be carried forward after her death’, and if Mrs M did so this ‘would … honour AM’s wishes, and would be the last thing that [Mr and Mrs M] could do for her’ [34].
The Decision
While sympathetic to the arguments, Ouseley J dismissed Mr and Mrs M’s claim ‘conscious of the additional distress which this will bring to [them], whose aim has been to honour their dying daughter’s wish for something of her to live on after her untimely death’ [87]. Nevertheless, ‘[p]osthumous use of gametes requires the effective consent of the gamete provider. The donor’s next of kin … have no right under the Act to decide on the use or disposal of her gametes’ [12]. Furthermore, and as submitted by the HFEA’s counsel, ‘effective, written and informed, consent is at the heart of the way in which the HFE Act resolves and balances the many and complex issues of storage and use of gametes’ [62]. Thus, the contents of the three consent forms signed by AM, especially the WS form, were crucial in this case.
With regards to the grounds for challenging the HFEA’s decision, Ouseley J held that (i) the Statutory Approvals Committee was entitled to conclude that while there was evidence that AM wanted Mrs M to be her surrogate while she was alive, there was not ‘sufficiently clear’ evidence that she wanted this after her death [46]. There was no ‘clarity of intentions in the circumstances which actually had to be faced’ [49], and ‘no evidence that AM had ever contemplated or consented to the export of her eggs, or to a sperm donor or overseas sperm donor or one selected by her parents, or had thought through and consented to the implications of foreign law governing the ability of the child to establish the identity of the father and to make contact’ [51]. There was also ‘no evidence that AM had ever discussed the question of donor sperm with anyone … [or] … that she understood the implications for her mother’s health or the legal implications of her mother acting as surrogate’ [51].
There was time between January 2010 and her death in June 2011 for AM to consider and discuss these issues but she did not do so, and because of this ‘nobody knew if AM would have consented to [the use of her eggs by Mrs M after her death] if she had known of the steps which her parents would have to take to fulfil her wishes’ [53]. Furthermore, it was clearly stated on the WS form that another form needed to be signed if AM wanted her eggs to be used posthumously, and ‘[t]he IVF Hammersmith form, signed at the same time as the WS form, clearly conveys no consent to the creation of embryos’ [53]. Thus, ‘the effect of express consideration of those aspects on how AM would view them was not known with the necessary clarity’ [55].
While counsel for Mr and Mrs M submitted that the Committee was ‘simply allowing a want of paperwork to stand in the way of AM’s clear wishes’, Ouseley J held that the absence of completed forms ‘was not fatal at all to a positive decision’. Rather, ‘[i]t was … the fact that so many issues of importance were never discussed, and resolved, when there had been time for them all to be discussed with the mother and others, and resolved’ [56]. Thus, ‘this was not simply or solely a matter of paperwork, or even a matter of paperwork at all’. Ground 1 must therefore fail.
(ii) Similarly, ground 2 must fail because the Committee had to exercise its powers and discretion so as to ‘advance the purposes of the Act and not to undermine them. The discretion could not be exercised to dispense with crucial policies underlying the Act’ [63]. The Committee was entitled to decide that AM’s ‘expression of wishes was not settled and did not cover a variety of matters which were involved in the application’, and ‘to regard the missing requirements of effective informed consent as a whole, as decisive’ [68].
(iii) Finally, Ouseley J held that the HFEA’s refusal of the Special Direction did not engage Mr and Mrs M’s Article 8 rights, and he did not accept that they had any Article 8 right to use AM’s gametes [79]. And even if this analysis was incorrect, the refusal did not breach their Article 8 rights because it was in accordance with the law and was ‘justified by the public interests underlying the structure and procedures in the Act’ [80]. Ground 3 thus also failed.
Some thoughts
This is a balanced and well-thought through judgment in which Ouseley J considers the position of the parties before him without being swayed by the obvious emotions involved and the distress that his decision will cause. It is not hard to imagine how a parent would feel when their only child dies in their 20s, and a ‘link’ to them exists which, if used, could be seen as enabling that only child to continue to live. We know from research involving adoptees and those conceived via donated gametes that familial links, connections and information are viewed by many as critically important (Recognised in the adoption context in the Adoption and Children Act 2002, and for donor-conceived children see, for example, E Blyth, M Crawshaw, L Frith, C Jones, ‘Donor-conceived people’s views and experiences of their genetic origins: A critical analysis of the research evidence’ (2012) 19 Journal of Law and Medicine 769). And it is one of the benefits of assisted reproductive technologies that they can enable those who might once have been unable to have a child genetically related to them to do just that. But such technologies may also challenge existing legal frameworks and ethical norms, and so require us to consider implications of their use which those who developed them may never have (could ever have) considered. This case requires us to do just that.
If the HFEA had permitted AM’s eggs to be exported and they were then fertilised with donor sperm, implanted in Mrs M and a pregnancy established and carried to term, then under section 28 of the amended 1990 Act Mrs M would be the legal mother of that child. A child she had carried and given birth to, a child created by her daughter’s eggs. Some would see her as both ‘mother’ and ‘grandmother’ to the same child. Ouseley J stated that Mr and Mrs M had ‘spoke[n] of family support, and how at the right moment they would tell any child about [AM] and how the child came to be born’ [35], but it is difficult to comprehend when this might be or what it might entail. And if the fertilisation and implantation occurred in the UK, then under section 13(5) of the amended 1990 Act a careful assessment of the welfare of the child would be required before Mrs M could be treated. It appears that the same was not required by the treatment centre in New York to which Mr and Mrs M wanted AM’s eggs exported.
And, of course, AM’s eggs would need to be fertilised with donor sperm, and two sperm banks in the US had been selected by Mr and Mrs M who ‘would select a donor who is as close to A’s origin’s as possible’ [38]. But, as Ouseley J noted, such donations raise a number of issues themselves, including whether to use a known or anonymous donor, the criteria used to select potential donors, the use of an overseas donor and matters raised by another jurisdiction’s approaches to paternity post-donation, knowledge of the identity of the donor and/or any subsequent contact [51]. Indeed, AM did not appear to have considered the practical considerations relating to sperm donation, even though she had had time to do so [47].
The physical and emotional impact on Mrs M of acting as a surrogate at 58 would also need to be considered, and Mr and Mrs M were apparently ‘aware of the very small chance that Mrs M would become pregnant and of the many stages at which things could go wrong’ [35]. That they wanted to proceed regardless can be seen as evidence of the strength of their desire to fulfil their daughter’s wishes, or as a cause for concern indicating that they were willing to proceed regardless of the risks and low chance of success. Health risks include those relating to taking fertility drugs, multiple births, and the latest figures from the HFEA indicate that the live birth rate per IVF treatment cycle in 2012 for donated eggs and donated sperm for those aged 45 and over was only 28.9% (HFEA, Fertility Treatment in 2013 (HFEA, 2014) p 36, Table 19).
This case emphasises the importance of ensuring that when the decision to freeze gametes is made, all possible uses of those gametes are considered, discussed and recorded. Sometimes these matters will need to be considered quite quickly and at times of emotional distress, but it is important to think through the implications of freezing gametes to ensure that they are stored and used as the gamete provider intends. IVF providers have a duty to ensure, as far as possible, that patients are notified of the possibilities and options available to them, and those considering freezing their gametes must also take responsibility for thinking about and recording what they want to happen too.
Sara Fovargue is a Reader in Law at Lancaster. She researches in the areas of health care law and ethics, and family law. She has written widely in the field of health care law and ethics, including Xenotransplantation and Risk: Regulating A Developing Biotechnology. With Alexandra Mullock she co-edited The Legitimacy of Medical Treatment: What Role for the Medical Exception? (Routledge, 2015).
You can find out more about Sara’s research at: http://www.lancaster.ac.uk/fass/law/profiles/Sara-Fovargue