This week at the Progress Educational Trust (25 April 2017)
The Progress Educational Trust (PET) is currently busy working on its upcoming events programme, following the success of its packed public debate 'Fertility Treatment Add-Ons: Do They Add Up?'.
The debate - which was sponsored by the British Fertility Society and chaired by PET's Chair of Trustees Fiona Fox - saw four leading figures in the practice and regulation of fertility treatment (Professor Adam Balen, Sally Cheshire, Dr Simon Fishel and Dr Raj Mathur) debate the merits and demerits of IVF 'add-ons'. The event was reported in the Daily Mail and blogged about by attendees, while a summary of the discussion was published on PET's flagship publication BioNews.
IVF add-ons have also been discussed in a number of other BioNews articles in recent weeks, including this piece (written by Professor Adam Balen, a panel speaker at PET's debate) responding BBC1's Panorama programme Inside Britain's Fertility Business, and this piece from the perspective of a small fertility charity (the Jewish charity Chana). Subscribe to BioNews for free here to receive the latest news and views on this area in your inbox every week.
All of the panel speakers at the 'Fertility Treatment Add-Ons' debate were also involved in the Fertility Show in Manchester, where two of PET's Trustees - John Parsons and Professor Allan Pacey - gave seminars. John's seminar focused specifically on add-ons, a subject on which he has been quoted recently in the Daily Mail and in the Telegraph.
Another place where add-ons have been discussed is the latest Annual Conference of the UK's fertility regulator, the Human Fertilisation and Embryology Authority (HFEA), where PET was one of the exhibitors.
The conference opened with a speech by the HFEA's Chair Sally Cheshire (another panel speaker at PET's debate), who paid tribute to PET's work on the 14-day limit on human embryo research (more on which below), and also announced that the HFEA had issued its first ever licence - to Newcastle Fertility Centre - for the use of mitochondrial donation in treatment.
PET could not have been more pleased by this news, having spent a decade campaigning for mitochondrial donation - so-called 'three-person IVF' - to be made available to patients. Indeed, PET was instrumental in changing the UK's laws so that such techniques could be permitted in treatment.
Mitochondrial donation is now one of the options discussed on a new NHS resource for patients and families who have, or are at risk of, mitochondrial disease - the Rare Mitochondrial Disorders Service website, developed with the input of PET's fellow charity the Lily Foundation for Research into Mitochondrial Disease.
Besides exhibiting at the HFEA conference, PET also exhibited at 'From Cancer to Blindness: Can Science Save the Day?', a public engagement event organised by the British Society for Gene and Cell Therapy (BSGCT) in Oxford's beautiful Museum of Natural History. This event - reported on the BSGCT website here - was attended by hundreds of school pupils, many of whom flocked to PET's exhibition stand and subscribed to BioNews.
Another recent event in which PET has been involved is the Annual Conference of Families Through Surrogacy. PET Director Sarah Norcross moderated a session on 'Matching and Working with Egg Donors and Surrogates' and chaired a session entitled 'Improving Your Chances of a Successful Journey', as well as chairing an additional session focused on the perspective of surrogates.
Speaking in her capacity as a member of Surrogacy UK's Working Group on Surrogacy Law Reform, Sarah was also quoted - alongside PET's Patron Baroness Mary Warnock - in a new investigation into the surrogacy industry published by the Mail on Sunday.
PET Communications Officer Sandy Starr has been equally busy, giving a presentation to the Science and Technology Committee of the House of Commons in which he proposed an inquiry into the 14-day limit on human embryo research. His presentation drew upon the proceedings of PET's landmark conference 'Rethinking the Ethics of Embryo Research: Genome Editing, 14 Days and Beyond'.
PET's 'Rethinking the Ethics of Embryo Research' conference continues to receive widespread media coverage. Earlier this year, BBC Radio 4 broadcast Matthew Hill's documentary Revisiting the 14-Day Rule, which featured recordings from the conference and interviewed several of the speakers (listen to the first episode here and the second episode here). That documentary has now been adapted by Matthew into a new programme, for the BBC World Service's Discovery series, entitled Extending Embryo Research (listen to it here).
The updated programme covers the latest research by conference speaker Professor Magdalena Zernicka-Goetz, who has managed to create an entity resembling a mouse embryo out of stem cells. PET Adviser Dr Dusko Ilic has discussed this breakthrough in a comment piece for BioNews, while a call for new ethical guidelines - to govern the use of similar embryo-like entities, when they are created from human stem cells - has also been reported on BioNews.
Elsewhere, the 'Rethinking the Ethics of Embryo Research' conference is the subject of a new article in the social science publication Backchannels. The authors, who have discussed PET's previous conference on biomedical breakthroughs in a paper for the journal Engaging Science, Technology, and Society (download that paper here), have now taken the opportunity to compare and contrast the two PET conferences.
Another focus of recent media coverage of embryo research is the person who gave the opening keynote address at PET's conference, and who was the original architect of UK policy in this area - PET's Patron, Baroness Mary Warnock.
Baroness Warnock's pioneering work is discussed in a piece on the British Library website (which focuses on her collaboration with the developmental biologist Anne McLaren) and a piece in New Statesman magazine (which uses her as an example of an era when 'leading philosophers chaired important public inquiries and commissions').
More than 30 years ago, Baroness Warnock led the Government inquiry where the 14-day limit on human embryo research was originally proposed. Now, the Commons Science and Technology Committee has responded to PET's proposal for a new inquiry into the 14-day rule, saying:
PET welcomes this response, as the charity has already taken a close interest in the Committee's 'Genomics and Genome Editing' inquiry. Indeed, PET's work has been mentioned during the course of this inquiry - giving evidence on genome editing, the outgoing Director of PET's fellow charity Genetic Alliance UK told the Committee:
This work on the public understanding of genome editing could not be more timely, given the recent publication of the high-profile report Human Genome Editing: Science, Ethics, and Governance (PET's Sarah Norcross has been quoted by Reuters describing the recommendations of this report as 'sensible and prudent'), plus ongoing developments in the use of genome editing in Chinese embryo research and related innovations in diagnostics.
Another of the experts who gave evidence to the 'Genomics and Genome Editing' inquiry was Dr Kathy Niakan, the first researcher licensed by the HFEA to use genome editing in human embryo research. Dr Niakan was a speaker at PET's 'Rethinking the Ethics of Embryo Research' conference, and more recently she discussed her work at the Royal Society of Medicine conference 'Gene Editing in Medicine: Breakthrough or Thin End of the Wedge?' (which was attended by Fiona Fox and Sandy Starr of PET).
A different area of policy that has been keeping PET busy is the public funding of fertility treatment. Sarah Norcross met recently with the MP Steve McCabe to discuss the subject, after he initiated a much-needed debate about fertility funding in Parliament.
Sarah has also been giving numerous interviews on this topic, in her capacity as Co-Chair of the campaigning organisation Fertility Fairness. When Croydon became the first area of London to cut all public funding of fertility treatment (a decision that is being challenged), Sarah was quoted in the Evening Standard and in the Croydon Advertiser saying 'Croydon CCG is failing its patients and is completely disregarding public opinion'.
Other new restrictions on IVF funding include an age restriction in Nottinghamshire (Sarah was interviewed about that policy by the radio station Trax FM), and a reduction in publicly funded cycles in the Wirral. Meanwhile, authorities in Cambridgeshire and Peterborough are currently consulting on plans to cut all publicly funded IVF - you can respond to that consultation here.
Happily, and by way of contrast, fertility patients throughout Scotland will now have access to the three cycles of publicly funded IVF that are recommended by the National Institute for Health and Care Excellence. Sarah has been quoted in the Daily Mail saying that the rest of the UK should 'follow the Scottish Government's lead and take immediate action to stop the rationing of fertility treatment'.
Having already worked with the Scottish Government on two public debates about fertility treatment last year - 'Can Women Put Motherhood on Ice?' and 'Frozen Assets? Preserving Sperm, Eggs and Embryos' - PET is delighted to announce that it will be collaborating on further debates in Scotland later this year. Further details will be published here as soon as they are confirmed.
In other news, PET would like to congratulate one of its longstanding volunteers - Ëlo Luik - on coming runner-up in the 'Making Sense of Society' writing competition run jointly by the Economic and Social Research Council and SAGE Publishing. The article that Ëlo submitted for the competition - 'Cross-border surrogacy: exploiting low income women as biological resources?' - has now been published by the Guardian newspaper.
And finally, a film of a debate produced and chaired by PET's Sandy Starr - entitled 'What Is Gender?' - has been made freely available online and can be watched below. The debate boasts speakers including leading biomedical researcher Professor Robin Lovell-Badge (who is involved in PET's current work on genome editing) and the eminent anthropologist Professor Dame Marilyn Strathern.