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The Progress Educational Trust (PET), informing debate on assisted conception and genetics

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Human Clinical Embryology and Assisted Conception MSc

This week at the Progress Educational Trust (24 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?'.

Professor Adam Balen, Chair of the British Fertility Society and speaker at the Progress Educational Trust event 'Fertility Treatment Add-Ons: Do They Add Up?' Fiona Fox, Chair of Trustees at the Progress Educational Trust (PET) and chair of PET's one-day conference 'Rethinking the Ethics of Embryo Research: Genome Editing, 14 Days and Beyond', taking place at University College London's Institute of Child Health on Wednesday 7 December 2016 This event - 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 flagship publication BioNews.

Dr Simon Fishel, Founder and President of CARE Fertility and speaker at the Progress Educational Trust event 'Fertility Treatment Add-Ons: Do They Add Up?' Dr Raj Mathur, Consultant Gynaecologist and Lead for Reproductive Medicine at St Mary's Hospital and speaker at the Progress Educational Trust event 'Fertility Treatment Add-Ons: Do They Add Up?' IVF add-ons have also been discussed in a number of other BioNews articles in recent weeks, including this piece responding BBC1's Panorama programme Inside Britain's Fertility Business (written by Professor Adam Balen, a panel speaker at PET's debate) 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.

Professor Allan Pacey, Trustee at the Progress Educational Trust (PET) John Parsons, Trustee at the Progress Educational Trust (PET) 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.


Add-ons were also discussed id the latest Annual Conference of the UK's fertility regulator, the Human Fertilisation and Embryology Authority (HFEA), where PET was one of the exhibitors.

Sally Cheshire, Chair of the Human Fertilisation and Embryology Authority and speaker at the Progress Educational Trust event 'Fertility Treatment Add-Ons: Do They Add Up?' The conference opened with a speech by the HFEA's Chair Sally Cheshire (a panel speaker at PET's 'Fertility Treatment Add-Ons' debate). In her speech she 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.

The Lily Foundation for Research into Mitochondrial Disease 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, which been developed with the input of PET's fellow charity the Lily Foundation for Research into Mitochondrial Disease.


The British Society for Gene and Cell Therapy's event 'From Cancer to Blindness: Can Science Save the Day?' 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, who flocked to PET's exhibition stand to subscribe to BioNews.

Sarah Norcross, Director of the Progress Educational Trust (PET) and Commissioning Editor of PET's flagship publication 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' plus an additional session focused on 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.

Sandy Starr, Communications Officer at the Progress Educational Trust (PET) and Webmaster of PET's flagship publication BioNewsPET 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'.


Matthew Hill presents 'Extending Embryo Research' on the BBC World Service The '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 entitled Extending Embryo Research, for the BBC World Service's Discovery series - listen to it here.

Magdalena Zernicka-Goetz, Professor of Mammalian Development and Stem Cell Biology at the University of Cambridge and speaker at the Progress Educational Trust conference 'Rethinking the Ethics of Embryo Research: Genome Editing, 14 Days and Beyond' The updated programme covers the latest research breakthrough 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, and 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 have already discussed PET's previous conference on biomedical breakthroughs, in a paper for the journal Engaging Science, Technology, and Society (that paper can be downloaded here), and have now takes the opportunity to compare and contrast the two PET conferences.


Baroness Mary Warnock, Patron of the Progress Educational Trust (PET) and keynote speaker at the Progress Educational Trust conference 'Rethinking the Ethics of Embryo Research: Genome Editing, 14 Days and Beyond' Another focus of recent media coverage of embryo research, besides PET's conference, is the person who gave the opening keynote address at the conference and who was in fact the original architect of UK policy in this area - PET's Patron Baroness Mary Warnock. Her pioneering work in this area 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').

'Genomics and Genome Editing' inquiry, Science and Technology Committee of the House of Commons 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:

'Some aspects of the ethical issues highlighted in this proposal are relevant to those in our current inquiry into Genomics and Genome Editing and we will look into these. The broader question of whether there should be a public inquiry on the 14-day rule on the scale of that conducted by Baroness Warnock in the 1980s would require more detailed consideration, however, so we will return to this issue once we have undertaken our work on Genomics and Genome Editing.'


Genetic Alliance UK This is a welcome response, as PET was already closely following the 'Genomics and Genome Editing' inquiry. Indeed, PET's work has been mentioned during the course of this inquiry - giving evidence, the outgoing Director of PET's fellow charity Genetic Alliance UK told the Science and Technology Committee:

'Genetic Alliance UK, in partnership with the Progress Educational Trust is currently undertaking a series of activities to consult our members and the public about what they understand, and how they would like to see information communicated to them in order to be able to appreciate the nuances.'

Dr Kathy Niakan, Group Leader in Human Embryo and Stem Cell Research at the Francis Crick Institute and speaker at the Progress Educational Trust conference 'Rethinking the Ethics of Embryo Research: Genome Editing, 14 Days and Beyond' PET's work with Genetic Alliance UK on genome editing could not be more timely, given the recent publication of the high-profile report Human Genome Editing: Science, Ethics, and Governance - Sarah Norcross has been quoted by Reuters describing the recommendations of this report as 'sensible and prudent'. Then there are ongoing developments in the use of genome editing in Chinese embryo research.

One of the experts who gave evidence to the 'Genomics and Genome Editing' inquiry - Dr Kathy Niakan, the first researcher licensed by the HFEA to use genome editing in human embryo research - discussed her work at PET's 'Rethinking the Ethics of Embryo Research' conference. More recently, she discussed this subject at the Royal Society of Medicine conference 'Gene Editing in Medicine: Breakthrough or Thin End of the Wedge?', which was attended by PET's Fiona Fox and Sandy Starr.


Steve McCabe, Labour MP for Birmingham Selly Oak, discusses the public funding of fertility treatment in a House of Commons debate Another area of policy, unrelated to the 14-day rule or genome editing, has been keeping PET very busy - namely, the public funding of fertility treatment. Sarah Norcross recently met with the MP Steve McCabe to discuss this subject, after he initiated a much-needed debate about fertility funding in Parliament.

Fertility Fairness, an organisation which campaigns for people to have comprehensive and equal access to fertility treatment 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 recently introduced restrictions on IVF funding include a new age restriction in Nottinghamshire (Sarah was interviewed about that decision 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, and you can respond to that consultation here.

The Scottish Government, supporter of the Progress Educational Trust events 'Can Women Put Motherhood on Ice?' and ' Frozen Assets? Preserving Sperm, Eggs and Embryos' 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. Watch this space for further details.


Ëlo Luik, Volunteer at the Progress Educational Trust and runner-up in the 'Making Sense of Society' writing competition run jointly by theEconomic and Social Research Council and SAGE Publishing 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 leading anthropologist Professor Dame Marilyn Strathern.

The debate was held at the Barbican Centre as part of the annual Battle of Ideas festival, and was filmed by the education charity WORLDwrite. Enjoy!

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