When to Stop Storage: Improving Conversations About Unused Embryos

The latest online event from the Progress Educational Trust (PET) brought together a range of speakers to discuss the need to improve conversations surrounding unused embryos.

Sarah Norcross, director of PET, opened the conversation by explaining how some fertility patients may have embryos left in storage after their treatment and that, for various reasons, the embryos may no longer be required by them. In these situations, the current options include donating the embryos to research or training, altruistic donation to other people for family building, or removing the embryos from storage to be respectfully allowed to perish.

These choices can be challenging, and many patients delay or avoid decisions, resulting in embryos being removed from storage by default when storage consent expires; recent legislation in July 2022 requires that storage consent is renewed every ten years for an overall maximum of 55 years.

The speakers at this event were well placed to help the audience understand the current provision and the patient perspective of these conversations, stimulating a lively Q&A for areas for improvement.

The first speaker, Joanne Leitch, lead scientist at Fertility Scotland, emphasised the importance of the issue in question, especially given the number of treatment cycles with storage and fertility preservation has risen by 700 per cent in the last five years.

Leitch described the frequent touch points throughout treatment reproductive clinical scientists have with patients. She also explained how clinical reproductive scientists are routinely responsible for the cryomanagement system, monitoring and maintaining storage facilities (including being on 24-hour call in case of emergencies), managing consent and embryo fate and are the first point of contact for people with embryos in storage. The core professional values of compassion, respect and dignity combined with extensive specialist training support patients' anxieties and convey complex information in a way that people can understand to make informed decisions.

Working as part of the multidisciplinary team has value as it enables referrals to specialist fertility counsellors and clinicians for further support. However, she emphasised that clearer pathways and increased access to options and toolkits for assisting decision-making would be welcome.

Next to speak was Anne Chien, a counsellor at the Assisted Conception Unit, Ninewells Hospital, Dundee, who shared her first-hand experience of the emotions people have expressed during conversations regarding continued embryo storage: confusion, guilt, loneliness, frustration, and anger. Reasons for ceasing storage included financial (if storage fees are payable), moving on and the need for closure. Reasons to continue storing included tempting fate, 'just in case', and 'holding on'.

The complex nature of these decisions requires counselling to be offered every time patients are approached about giving and renewing consent (HFEA Code of Practice 2022). Sadly, funding for counselling may not be available or can be limited to a single session.

Chien shared recent conference data where almost half of the 54 responses to storage letters requested embryos to be allowed to perish. I noted that only 54 responses were received from 291 letters sent, highlighting the level of delay/avoidance many professionals who support people with this issue encounter. This will only become more prevalent as the number of embryos in storage and the length of permitted storage increase. Chien exemplified her message with convincing case studies for informed choice while allowing a safe place for people to consider and reflect on their thoughts and individual feelings.

The final speaker, Sharon Martin, business development manager at Fertility Network UK, asked the audience to consider how the pathway to the creation of embryos can impact a person's perspective; the quote 'the pain involved in this journey is not comparable to anything else' was a powerful reminder of the emotions involved when facing storage decisions.

Martin echoed the prominent issues raised by the previous speakers, additionally describing how improved information and resources would be helpful alongside facilitating networks for people to connect and share their experiences. Martin concluded that there is no right or wrong decision; people should decide what is right for them individually.

The level of audience engagement in the Q&A demonstrated the importance of the event topic. For example, exploring how we can achieve a sensitive balance around negative language, such as 'perish', 'discard' and 'destroy', while maintaining clarity of meaning. Further, ensuring that donation to research is an option for all patients and is not exclusive to clinics with links to research projects. Finally, the audience called for clarity on the law as to whether clinics can allow patients to take their thawed embryos home if they wish to mark or honour the loss in some way.

Overall, the event demonstrated that there exists a collective professional awareness of the difficulty and lifelong nature of these decisions, with both the speakers and audience united in the call for research around support and improved provision of information from regulators.

PET is grateful to the Scottish Government for supporting this event.