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Why the UK Government should modernise the law on embryo and gamete storage

24 February 2020
Appeared in BioNews 1036

The Government has launched a public consultation (open until 5 May 2020) on whether the UK's maximum storage periods for eggs, sperm and embryos should be reviewed. Progress Educational Trust (PET)'s #ExtendTheLimit campaign has played an important role in getting this on the public agenda, and the UK fertility community now needs to get behind the consultation to encourage the Government to modernise the law.

Media coverage of the debate so far has particularly highlighted the difficulties faced by women storing their eggs because they are not yet ready for motherhood. Under the current law, they can only store their eggs for ten years, creating pressure on them to start a family before they may be ready, as well as discouraging them from storing their eggs at a younger age, even though this optimises their chance of success further down the line.

In 21st century Britain this just seems absurd – what justifies women not being able to make their own choices about when is best to store their eggs or conceive? However, it is also important to remember that women storing eggs for social reasons are not the only potential beneficiaries of a better law on embryo and gamete storage – couples with stored embryos and men with stored sperm will benefit too.

What does the current law say and why?

UK law currently imposes a ten year maximum storage period for eggs, sperm and embryos. The time restriction was introduced in 1991 when the fertility sector in the UK first became regulated, based on a concern about burdening fertility clinics with ever-growing storage obligations as well as the safety of using embryos or gametes that had been stored long term. However, Parliament recognised that maximum storage periods would be unfair for some patients (particularly cancer patients who had undergone treatment that made them infertile), and so regulations were passed in 1991 and 1996 making an exception to the general rule and allowing storage to be extended in a narrow range of defined circumstances.

The original regulations allowed storage to be extended until roughly the patient's 55th birthday. There were separate regulations for gametes (the Human Fertilisation and Embryology (Statutory Storage Period) Regulations, 1991) and embryos (the Human Fertilisation and Embryology (Statutory Storage Period for Embryos) Regulations, 1996), which were slightly different. For gametes, a medical practitioner had to confirm in writing that the patient had 'significantly impaired' fertility, whereas for embryos two medical practitioners had to confirm in writing that the patient was or would become 'prematurely and completely infertile'.

In 2009 both the 1991 and 1996 the regulations on storage periods were replaced by the Human Fertilisation and Embryology (Statutory Storage Period for Embryos and Gametes) Regulations 2009. The new regulations were in some ways more flexible. The previous requirement for 'significantly impaired' or 'complete' infertility was replaced with a unified requirement for 'premature infertility', and medical evidence was only required from one doctor rather than two for extending the storage of a patient's embryos.

The new regulations also allowed extended storage for donation and surrogacy as well as storage for a maximum of 55 years in total, rather than up to the patient's 55th birthday. However, in other ways the new regulations were more restrictive, requiring the storage period to be renewed every ten years and with a strict deadline for written medical confirmation and updated consent to be in place before each ten-year storage period expired.

To make things even more complicated, the new regulations applied to embryos and gametes stored after they took effect, but for embryos and gametes already in storage patients could either opt into the new regulations or stay within the old regulations.

Problems in practice:

What we have been left with is a very complicated set of rules. When we advise patients about extended storage, we always need to trawl the case history and dates of storage as well as any medical evidence; understand the patients' personal circumstances and review two different sets of regulations either or both of which may apply.

If the laws are difficult for us as lawyers to untangle, no wonder fertility clinics struggle. We have seen a rise in cases in recent years in which clinics have not properly understood or advised their patients when their storage period expires, and have referred patients to us for help after a problem is discovered.

One of the big difficulties is that, since the new regulations require the conditions for extended storage to be met before the current storage period expires, it may be too late to put the required consent and medical evidence in place in retrospect. In some cases, patients may be forced to destroy their gametes or embryos against their wishes because of a historic paperwork gap, even if they comfortably meet the medical criteria for extension and want their gametes or embryos to remain stored.

These 'gap in time' cases are perhaps the best example of where the existing law might be challenged on human rights grounds (as being discriminatory and an unjustified interference by the state in private and family life). The Government is sensible in seeking to review the law proactively to address these areas of injustice rather than waiting to have its hand forced by a court ruling.

What is the way forward?

The existing limits on storage were designed to draw a line between patients who should be permitted to extend storage and those who should not. The way in which that line is drawn is incredibly complicated and does not support clinics and patients making informed choices in good time. Without doubt, there is a case for clearer and simpler rules, which are easy to understand.

However, the wider issue is whether categorising some types of patients as more deserving than others is justified at all. Why should a cancer patient be able to store beyond ten years and not a woman who wants to defer motherhood? In a modern world of autonomy and choice (and less worry about the safety of storing genetic material long term), the whole rationale feels outdated.

There are ways other than storage limits to meet the practical concerns for clinics. We could, for example, require storage to be actively renewed (perhaps every ten years) so that if patients do not positively renew or do not pay their storage fees clinics are not obliged to maintain storage. In any event, perhaps clinics are now more concerned about the complexity of the current system than the duration of storage.

At a recent PET event (see BioNews 1032), my question to the panel about whether time limits should just be abolished in favour of patient choice was met with a round of applause from the audience. If this is anything to go by, there certainly seems to be widespread support in the sector for modernised law which gives more patient choice and flexibility. If you agree, please respond to the Government's short consultation to say so before 5 May 2020.

SOURCES & REFERENCES
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