This week at the Progress Educational Trust (10 August 2018)
The Progress Educational Trust (PET) has been busy marking the 40th birthday of the world's first IVF baby, Louise Brown - pictured right with the charity's Director, Sarah Norcross - and discussing the science and ethics of genome editing.
PET has been involved in several recent events at the Science Museum in London covering both of these subjects, including:
- A packed public discussion featuring Louise, entitled 'IVF at 40'.
- An accompanying exhibition, entitled 'IVF: Six Million Babies Later', which will be open to the public and free to attend in the museum's 'Who Am I?' gallery from now until November 2018.
- A special medicine-themed instalment of the museum's monthly 'Lates' series (discussed in greater detail below).
In conjunction with these events, PET has made two short videos - one featuring Sarah Norcross, and one featuring the charity's Communications Manager Sandy Starr - reflecting on the meaning of IVF's 40th anniversary.
Meanwhile, the Science Museum's Dr Roger Highfield - who will be chairing a session at PET's 5 December conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?' - has conducted a video interview with PET's Patron Baroness Mary Warnock, discussing how she and her colleagues built the foundations of today's IVF and embryo research regulation.
Roger has also written for the Science Museum about Baroness Warnock's work, and in particular her recommendation of a 14-day limit on human embryo research - a recommendation which is still upheld in law today.
Roger mentions PET in other recent articles for the Science Museum, about Louise Brown's 40th birthday celebrations and about the past, present and future of IVF. These have been published alongside an article in which PET Adviser Professor Martin Johnson recalls his work with IVF pioneer Professor Sir Robert Edwards.
Elsewhere, PET was joint organiser of a recent event at the Cheltenham Science Festival entitled 'The Birth of IVF', which was chaired by PET Trustee Professor Allan Pacey with speakers including Sarah Norcross and Dr Kay Elder. At the event, Kay revealed the identity of a previously anonymous benefactor whose funding was crucial to the work that led to Louise Brown's birth. This revelation was then reported in the Daily Mail and in The Times.
Also speaking at the event was Dr Jane Stewart, Chair of the British Fertility Society, who went on to write an article about Louise Brown's 40th birthday for PET's flagship publication BioNews (to which you can subscribe for free here).
Although the Science Museum's exhibition is entitled 'IVF: Six Million Babies Later', that figure of six million - the estimated number of IVF babies born worldwide since Louise Brown - has in fact recently been increased to eight million, as reported by Sarah Norcross in BioNews.
Sarah was reporting from Barcelona, where the revised estimate was announced at the Annual Conference of the European Society of Human Reproduction and Embryology (ESHRE). Attending this conference with Sarah was PET/BioNews Science Editor Shaoni Bhattacharya, who filed the following reports for BioNews about research presented at the conference.
- Model predicts chance of having normal embryo as women age
- 'Artificial ovary' for humans passes key milestone
- Womb scratching: common IVF add-on has no benefit
- 'Energising' patients' eggs for ICSI has no effect
- 100-year-old method of fallopian flushing works years later
- DNA shed by embryos could offer non-invasive testing
Shaoni also conducted an interview for BioNews with the Chair of ESHRE, Dr Roy Farquharson, who will be chairing a session at PET's upcoming 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?' conference.
Besides celebrating the beginnings of IVF, PET has been campaigning to rectify the fact that in the UK - the very country where IVF was pioneered - fertility patients often find it difficult or impossible to access NHS-funded IVF treatment. The Times published a letter by Sarah Norcross drawing attention to this fact, and calling on clinical commissioning groups (CCGs) to offer the number of NHS-funded IVF cycles recommended by the National Institute for Health and Care Excellence (NICE).
Sarah made the same point in a recent meeting with Jackie Doyle-Price, the Health Minister responsible for fertility. Following this meeting the Minister said the following, in response to a question in the House of Commons: 'We are very clear. We expect all CCGs to honour the NICE guidelines. I am very cross that CCGs tend to view IVF services as low-hanging fruit with which to make cuts. That is totally unacceptable and I will be taking steps to remind them of that.'
Another political forum where Sarah recently made the case for better IVF provision was an event in the Houses of Parliament to launch Evidence Week (a joint initiative of the House of Commons Library, the Commons Science and Technology Committee, the Parliamentary Office of Science and Technology and the charity Sense about Science). At this event, Sarah addressed Parliamentarians on the importance of evidence to PET's campaigning and policy work.
The other major focus of PET's recent work has been genome editing, with the charity exhibiting at a medicine-themed Science Museum 'Lates' event. PET's exhibition stand featured an applied ethics exercise developed from the charity's 'Basic Understanding of Genome Editing' project, and over the course of several hours, hundreds of visitors flocked to the stand to explore the ethics of different hypothetical uses of genome editing in assisted conception.
The same applied ethics exercise proved popular with school pupils, when PET exhibited recently at at Oxford's Museum of Natural History at an event - produced by the British Society for Gene and Cell Therapy - entitled 'Back to the Future: From Genetics to Medicine'. This event also saw PET Communications Manager Sandy Starr and PET/BioNews Legal Editor Jennifer Willows give a joint presentation entitled 'Ethical Distinctions in Genome Editing: Laboratory and Clinic, Germline and Soma, Treatment and Enhancement'.
Meanwhile, an earlier presentation by Sandy about genome editing, given at PET's most recent Annual Conference, has been adapted into a journal article entitled 'How to Talk About Genome Editing'. This was the lead article and 'Editor's Choice' in the June 2018 edition of the British Medical Bulletin.
A presentation from the same conference by Dr Andy Greenfield - who will be returning to speak at PET's upcoming 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?' conference - has been adapted into another British Medical Bulletin article, entitled 'Carry On Editing'.
Both the 'Basic Understanding of Genome Editing' project and Sandy's British Medical Bulletin article are cited in the Nuffield Council on Bioethics' new report Genome Editing and Human Reproduction: Social and Ethical Issues, which has been the subject of widespread coverage in the national and international media. The Nuffield Council's Assistant Director, Dr Peter Mills, has written a comment piece about the report for BioNews.
Sarah Norcross has also responded to the publication of the report, saying on behalf of PET: 'We welcome this report's conclusion that the clinical use of genome editing to make heritable changes may be ethically acceptable, if certain stipulations are met. We also agree with the report's call for thoroughgoing public debate about this technology, and with its identification of the HFEA as the best placed competent national body to regulate the future use of genome editing in assisted conception.'
Finally, PET has been busy working on a packed new programme of public events which will run from now until the end of the year, culminating in the charity's Annual Conference.
Please email Sandy Starr at firstname.lastname@example.org to book for or enquire about any of the events discussed below.
PET is producing this event in partnership with Genomics England and it forms part of the Genomics Conversation, discussing the UK's 100,000 Genomes Project and the imminent launch of the new national NHS Genomic Medicine Service.
'Modern Surrogacy Needs a Modern Law: How Should We Regulate Surrogacy in the 21st Century?' is a free-to-attend event taking place in Edinburgh on the evening of Thursday 27 September. See here for details.
'Whose Genome Is It Anyway? Big Data and Your DNA' is a free-to-attend event taking place in Edinburgh on the evening of Wednesday 10 October. Further details of this event will be announced here shortly.
'Make Do or Amend: Should We Update UK Fertility and Embryo Law?' is PET's 2018 Annual Conference, taking place all day in London on Wednesday 5 December.
A stellar lineup of speakers and chairs has already been confirmed for this conference including Sally Cheshire, Emily Jackson, Dr Roy Farquharson, Natalie Gamble, James Lawford Davies, Professor Ellie Lee, Dr Andy Greenfield, Satu Rautakallio-Hokkanen, Professor Christian de Geyter, Erika Tranfield, Dr Roger Highfield, Dr Kylie Baldwin, Professor Robert Spaczyński, Fiona Fox and Sarah Norcross.
Conference sessions will include: 'Society Marches On: Key Social Changes', 'Science Marches On: Key Scientific Developments', 'A Patchwork of Policies: Assisted Conception and Embryo Research in Europe' and 'The Future of Fertility Law: What Must Change and When?'