27 January 2020
Allan Pacey, professor of andrology at the University of Sheffield, chaired the event, sharing his personal experience of the topic. At age 35, he developed testicular cancer and had to decide whether to freeze his sperm. During the event he commented that he could have taken out a mortgage with less paperwork.
Dr Melanie Davies, chair of Fertility Preservation UK, spoke first, addressing the problems facing those who freeze eggs or sperm for medical reasons. This is tracked by the number of NHS-funded egg freezing cycles recorded by the Human Fertilisation and Embryology Authority (HFEA) – some 200-300 cycles per year. Yet statistics also show that, while fewer than half of women treated for cancer require treatment that compromises their fertility, those who do require such treatment still far outnumber the egg freezing cycles that actually take place.
‘The greatest challenge’, Dr Davies said, ‘is awareness. Information not being given, referrals not being made when they could be.’ She recounted cases and surveys indicating that fertility treatment options are often omitted from cancer treatment plans. Oncologists can feel too poorly informed to discuss fertility options, and can also feel that they have limited time to do so. A 2012 survey has shown that it is usually the nurse who discussed fertility treatment options with patients.
Dr Davies also acknowledged that gamete freezing was bringing new challenges in ethics, mentioning cases of requested gamete freezing in couples where one member had a poor health prognosis. The fertility clinician would be obliged to consider the welfare of any child born to parents with terminal illnesses.
Next to speak was Sharon Jones, who has frozen her eggs. Her ‘journey’ began at around age 27, but had been ‘a rocky road’. She had found costs impossible to predict as she couldn’t know how many cycles, drugs or doses of drugs she would need – estimates ran anywhere from £5000 to £50,000. She learned that if she donated eggs as well, she might receive free egg storage. Having spent a long time agonising over whether she wanted to do this, she found out that this was no longer an option, as the clinic had withdrawn this incentive. Nor could she know exactly when she would be able to begin treatment, thanks to the irregularity of her period and the discovery of a small ovarian cyst.
She knew that research indicates younger eggs have a higher chance of conception (see BioNews 967), but then she learned that frozen gametes can only be legally stored for ten years in the UK. Both before and after her egg collection she had many questions, yet no one to answer them, other than an emergency hotline. Even after her egg freezing experience, she was still brought to tears by the amount of conflicting and stridently marketed information at the Fertility Show in London.
Jones offered three simple recommendations for clinics: provide information patients can take away, provide better patient support beyond an emergency number, and give clarification post-freezing about the status and location of stored gametes.
Rachel Cutting, Director of Compliance and Information at the HFEA, spoke next. She outlined the HFEA’s responsibilities as a regulator and how the rules on gamete storage, in the 2009 Regulations, can seem unforgiving. The regulations state that there can be no gaps in consent over the statutory period that gametes can be stored, and that this period may be extended only in limited circumstances when there is premature infertility.
The HFEA expect compliance with the statutory requirements for storage, and with the distinct requirements for extended storage. Moreover, clinics must ensure that patients give informed consent for gamete storage, and this should mean clinics are spending time making sure patients understand what treatment they are undergoing. It should not just be a tickbox exercise. Cutting explained that the HFEA does not want to penalise patients for genuine errors of misunderstanding or paperwork, and explained that the regulator intends to update future regulations to reflect this, while also applying regulatory consequences for clinics with a poor history.
James Lawford Davies, a partner in Hill Dickinson’s health team, spoke last, saying he was glad that people wanted to hear a lawyer talk about an ‘incredibly esoteric area of regulation’. In the UK, more provisions apply to the storage of embryos and gametes than to their use. ‘If I started storing sperm samples at home in my ice cube tray, I would require a licence from the HFEA for the storage, even if I’m only using them for gin’ Lawford Davies quipped, ensuring a personal future filled with nervous dinner party guests.
The fiercely specific considerations on consent and storage stem from difficult fertility treatment cases such as that of Diane Blood (see BioNews 197). Storage of embryos can only be extended if both gamete providers consent, and if a provider is likely to be prematurely infertile for medical reasons.
‘I am not aware of any cogent reason for the ten-year storage limit,’
Lawford Davies said. He concluded with a reflection that the legislation on gamete freezing is difficult for anyone to comprehend, including those with law degrees, and that this indicated a need for reform.
Audience members asked questions. If fertility returns, is gamete storage still lawful? This will be clarified after discussion with medical experts, said Cutting. What did panel members think about ‘egg freezing’ parties aimed at women? Jones believed they raised awareness, and that ambitious marketing was already rife in the fertility industry, while Dr Davies thought they were inappropriate events for discussions of serious medicine.
Asked about how different countries regulate fertility, Cutting reflected that other countries envy the UK’s firm regulation over fertility research and treatment, which has led to public trust and acceptance of groundbreaking treatments such as mitochondrial donation. Yet Lawford Davies added that IVF is still regulated with unnecessarily onerous and costly paperwork, based on a system designed in the 1980s. Questioned about the difficulties in updating patient consent alongside their confidential medical records, Dr Davies and Lawford Davies reflected that in the field of fertility, consent has become a very legalistic issue focusing on the right boxes being ticked and forms filled in. This contrasts with the more changeable, patient-specific, dialogue-based consent usually given in other medical fields. Clinics are under pressure to comply with both perspectives.
Dr Davies praised the example set in Scotland for people whose fertility is threatened by disease or medical treatment, and hoped that the rest of the UK would follow soon. Jones stated that the UK population needed to get behind campaigns such as #Extendthelimit (See BioNews 1021) to ensure that change occurs, reflecting that she had been wrongly advised that the ten-year storage limit would no longer be in effect well before her frozen eggs reached it. Cutting stated the HFEA intended to identify where complexities and errors lay around the HFE Act and related regulations, in order to provide better guidance, help and support to clinics and patients. Lawford Davies urged the public to speak up in favour of a debate in Parliament over how the law for storage should evolve. The conclusion was that reform of UK gamete freezing legislation is well overdue.
The Progress Educational Trust ( PET) is grateful to the Scottish Government for supporting this event.