This week at the Progress Educational Trust (4 May 2020)

Amid the global coronavirus/COVID-19 pandemic, the Progress Educational Trust (PET) continues its work seeking to improve choices for people affected by infertility or genetic conditions.

Recent weeks have seen PET respond to two key developments in UK fertility treatment during the pandemic.

• UK fertility clinics have had to cease all treatments. This has had devastating consequences for patients, especially - but by no means exclusively - those who had already begun their treatment. (Clinics will soon be able to apply on a case-by-case basis for permission to reopen, but there are no guarantees.)

• The UK Government has granted a two-year extension to the 10-year limit on the duration for which frozen eggs, sperm and embryos can legally be stored. The extension was granted in order to help patients affected by the suspension of fertility treatment.

PET very much welcomes the two-year extension, which was influenced by - and which underlines the need for - the charity's long-running #ExtendTheLimit campaign.

Women in the UK who freeze their eggs for medical reasons - because they are infertile, or likely to become so - have long been permitted to extend the storage limit from 10 years to an absolute maximum of 55 years.

However, women in the UK who freeze their eggs for non-medical ('social') reasons have never been given this option. Many of these women face a stark choice between seeing their frozen eggs destroyed, or becoming a mother before they are ready to do so.

PET's campaign calls for the law to be changed, so that all UK women can store frozen eggs for more than 10 years - regardless of whether or not their reasons for doing so are medical, and regardless of whether fertility treatment resumes or whether it continues to be suspended.

Sarah Norcross, Director of PET, has been quoted by iNews discussing both the new storage limit extension and PET's ongoing campaign.

Sarah says: 'This positive move will alleviate, in particular, the huge stress felt by women facing the 10-year storage limit for social egg freezing, and it also paves the way for the outdated, unscientific and discriminatory 10-year storage limit to be changed for all women seeking to preserve their fertility by freezing their eggs. PET now calls upon the Government to #ExtendTheLimit for social egg freezing and give women reproductive choice.'

PET volunteer Sharon Jones, a patient who has frozen her eggs, is quoted in the same iNews article saying: 'That whole conundrum baffled me - whether or not to freeze your eggs when you are younger and the egg quality is higher, or when you are older, so you can "prolong" your fertility because of the 10-year time limit. It upset me as well, not just me but women across the country. It's a completely arbitrary limit and there's no reason for it.'

You can read Sharon's story when you go to PET's #ExtendTheLimit petition at www.change.org/extendthelimit

Please sign and share this petition. If possible, please also post a comment when you sign (you need to be logged in to Change.org to do this but creating an account is easy), because comments by signatories help to add weight and appeal to the petition.

Meanwhile, PET continues its other work on other issues related to - and beyond - the pandemic.

• PET's Head of Communications, Dr Catherine Hill, has been quoted in the Observer newspaper - as well as in two Daily Mail articles (here and here), and in Tech Times - discussing the suspension of fertility treatment during the pandemic.

  Catherine says: 'Time is of the essence when it comes to fertility treatment. For some people, this shutdown means they may never become parents. This was going to be their last chance and they're not able to have it. That is deeply distressing and traumatising.'

  Catherine has also been interviewed on this subject on talkRADIO's Badass Women's Hour programme. Elsewhere, Catherine has published an article on the All About Fertility website, discussing how best to separate fact from fiction when reading about developments in fertility treatment.

• PET was one of 30 charities selected to attend the annual Women's Voices event, held at Google's Academy London venue to mark International Women's Day.

  Additionally, PET was one of three charities selected to give a presentation at the end of this event, following a brainstorming session with leading figures from the media industry. Sarah Norcross has been quoted in a Media Trust article, saying: 'The event has been fantastic; the knowledge and skills of the volunteers was so helpful. For a tiny charity, the support has been invaluable.'

• PET's Deputy Director, Sandy Starr, has participated in a conference held by the Changing Face of Medicine (CFM) project where the keynote speaker was Professor Chris Whitty - Chief Medical Officer for England, and a senior figure leading the UK Government's response to the coronavirus pandemic.

  This conference has been discussed in a Guardian newspaper profile of the CFM Lead, Professor Pali Hungin, which reports: 'Around 80 people were invited to attend a CFM conference organised by Hungin to discuss how clinicians and medical practice will evolve. The Chief Medical Officer for England, Professor Chris Whitty, was among those in attendance.'

  Sandy has also participated in a recent workshop held by the British Society for Genetic Medicine, to develop new professional guidelines for genetic testing in preconception, preimplantation and prenatal contexts. Elsewhere, Sandy has published an article in the European Journal, discussing recent advances in genome sequencing and genome editing.

• In relation to genome editing, Sandy's European Journal article discusses 'two important initiatives - one conducted by the World Health Organisation, one conducted jointly by the USA's National Academies and the UK's Royal Society - which will be working throughout 2020 to establish international standards'.

  PET has been keeping a close eye on both of these initiatives. The World Health Organisation's work on this area is overseen by the Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing, whose members include PET's Chair of Trustees Professor Robin Lovell-Badge.

  Meanwhile, the work led by the National Academies and the Royal Society is carried out by the International Commission on the Clinical Use of Human Germline Genome Editing. PET has participated in two meetings held by this Commission - one in Washington DC and one in London - and a presentation given by Sarah Norcross at the Washington meeting has been discussed in a report by Medscape.

• Besides feeding into these international deliberations, PET's work on genome editing has also fed into the deliberations of the UK Parliament - the charity has been cited by several politicians contributing to a recent House of Lords debate on this subject.

  Lord James Bethell concluded this debate by saying that the Government is 'committed to engaging world-class academics and expert groups such as the Progress Educational Trust, the Nuffield Council on Bioethics and the Wellcome Trust'.

  Since the debate took place, Lord Bethell has been appointed Innovation Minister at the Department of Health and Social Care, in which capacity he has led on the Government's decision to grant a temporary extension to egg, sperm and embryo storage limits.

  In the Government's announcement of this decision, Lord Bethell said: 'We are taking steps to ensure during these extraordinary times, those that have embryos, sperm or eggs stored as part of their treatment are not unfairly caught out by the existing storage limits and have the best possible opportunity to start their family in the future.'