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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 (30 January 2017)

The Progress Educational Trust (PET)'s next free-to-attend public event will be 'Fertility Treatment Add-Ons: Do They Add Up?', taking place at the Royal College of Obstetricians and Gynaecologists in London from 6pm on Wednesday 29 March.

The event, sponsored by the British Fertility Society, will address issues raised by BBC1's recent Panorama programme 'Inside Britain's Fertility Business' and by related research. To book your free place, email


Matthew Hill presents 'Revisiting the 14-Day Rule' on BBC Radio 4 In other news, PET has made a major contribution to Matthew Hill's new two-part BBC Radio 4 documentary 'Revisiting the 14-Day Rule', about the 14-day limit on human embryo research. Alongside the documentary, the BBC has commissioned a poll by YouGov which shows that almost half the general public would support a doubling of the 14-day limit to 28 days.

Sandy Starr, Communications Officer at the Progress Educational Trust (PET) and Webmaster of PET's flagship publication BioNews The documentary concludes by mentioning that the Science and Technology Committee of the House of Commons is due to consider a proposal for an inquiry into the 14-day rule. That proposal has been submitted by PET - read it here - and PET Communications Officer Sandy Starr is due to address the Science and Technology Committee on the matter next month.

The first episode of the BBC's documentary (listen to it here) explains how the 14-day rule was originally proposed by PET's Patron Baroness Mary Warnock, in her landmark report of 1984. The second episode (listen to it here) explores whether there is a case for revising the rule, and features recordings of debates at PET's recent 'Rethinking the Ethics of Embryo Research' conference on the issue.

Both episodes include interviews with speakers at PET's conference. Besides Baroness Warnock (who opened the conference with a keynote address), these interviewees include:

The findings of the YouGov poll that accompanies the documentary have also been discussed on BBC Radio 4's Today programme by two of the conference speakers - Simon Fishel and Alison Murdoch (Professor of Reproductive Medicine at Newcastle University) - and you can listen to that item here.


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' PET has been busy publishing material from its conference on its flagship publication BioNews, to which you can subscribe for free here. This material includes a new article by Baroness Warnock entitled 'Should the 14-day limit on human embryo research be extended?', which was published to mark the occasion of her being awarded the highest honour in the New Year Honours List.

Other conference-related articles published on BioNews recently include:

Meanwhile, the conference has been the subject of exhaustive coverage in the national media, including:

Additionally, some speakers have published material from their conference presentations online, including Professors David Jones (here) and Sarah Franklin (here). And PET is gratified that its conference on related issues the previous year is now the subject of an academic paper in the latest issue of the journal Engaging Science, Technology, and Society (download that paper here).


Sarah Norcross, Director of the Progress Educational Trust (PET) and Commissioning Editor of PET's flagship publication BioNews Besides the 14-day rule, the other major focus of PET's recent activities has been mitochondrial donation. The charity has continued its decade-long work campaigning for 'three-person IVF' to be made available to patients seeking to avoid the transmission of mitochondrial disease from mother to child, but has also expressed reservations about these techniques when they are used for other purposes.

Most recently, a child has been born in Ukraine following the use of mitochondrial donation as an experimental fertility treatment. PET Director Sarah Norcross has been quoted in the Telegraph and in the Independent saying:

'If this child appears healthy then that is good news, but we should be sceptical about the merits of mitochondrial donation when it is used as an unorthodox fertility treatment technique. The UK has seen some very thorough reports on the safety and efficacy of mitochondrial donation, but these assessed risk only in relation to patients wishing to avoid transmitting mitochondrial disease to their children. And even then, it was thought prudent to permit the techniques only for judiciously selected patients.'

James Menendez interviews the Progress Educational Trust's Sandy Starr on the BBC World Service programme 'Newshour' PET Communications Officer Sandy Starr has also been interviewed on this matter, on the BBC World Service programme Newshour - listen to the full interview here. He told interviewer James Menendez:

'Mitochondrial donation involves risks which have been thoroughly assessed in the UK, but have only been assessed in relation to patients trying to avoid the transmission of mitochondrial disease. And it's on that basis that people have decided that in very specific circumstances, and a regulated environment, the risk is worth taking. Whether the risk is worth taking in relation to an experimental fertility treatment technique is as yet unexplored.'

Baroness Elizabeth Barker While PET has reservations about the way three-person IVF has been used in Ukraine, the charity very much welcomes the latest steps toward these techniques - used for their intended purpose - being made available to UK patients. The Human Fertilisation and Embryology Authority (HFEA) has decided, in light of the latest scientific evidence, that it will now consider applications for licences to provide treatment using the techniques.

Sandy Starr attended the HFEA meeting where this decision was made, and also attended a briefing on the decision in the Houses of Parliament chaired by Baroness Elizabeth Barker. Meanwhile, Sarah Norcross was interviewed about the decision on Sky News.


Professor Allan Pacey, Trustee at the Progress Educational Trust (PET)Sarah has also been busy attending a wide variety of events on subjects in PET's remit, giving presentations and manning the charity's exhibition stand. Recent events have included:

  • Fertility 2017, a conference in Edinburgh organised by the British Fertility Society (sponsors of PET's upcoming 'Fertility Treatment Add-Ons' event) together with the Association of Clinical Embryologists and the Society for Reproduction and Fertility. PET Trustee Professor Allan Pacey was one of the speakers at this conference, while Sarah chaired a session for local secondary school students.

  • 'Biology in Action', a one-day event about advances in biomedicine which was chaired in its entirety by Sarah, and was attended by 700 school pupils. The event was organised by the Training Partnership and held at the Institute of Education.

  • Report on 'Body Politics: The Dilemmas of Regulating New Technologies', a conference at the University of Cambridge with speakers including the Progress Educational Trust's Sarah Norcross 'Body Politics: The Dilemmas of Regulating New Technologies', a conference organised by the University of Cambridge's Philomathia Social Sciences Research Programme. Sarah spoke at a session entitled 'Reproduction in an Era of Bioetech Revolution' - you can read about the conference proceedings here. Sarah also attended another event at the University of Cambridge to mark the 50th anniversary of the Centre for Family Research.

  • 'Insights', the annual Fertility Nurse Educational Forum organised by leading fertility nurses with the support of Merck. This was held in Brighton, and included a presentation by Sarah about the public funding of fertility treatment.


Steve McCabe, Labour MP for Birmingham Selly Oak, discusses the public funding of fertility treatment in a House of Commons debate Recent weeks have seen Sarah give numerous radio interviews about fertility treatment, some of which have covered IVF 'add-ons' (the focus of PET's upcoming event - Sarah was interviewed on this topic by Danny Pike of BBC Surrey and BBC Sussex) but most of which have been about shortcomings in the public funding of fertility treatment (listen to Sarah discuss this with BBC Essex's Sadie Nine and with BBC Stoke's Liz Ellis).

Fertility Fairness, an organisation which campaigns for people to have comprehensive and equal access to fertility treatmentSarah has long been campaigning for equitable access to IVF, in her capacity as Co-Chair of Fertility Fairness. The campaign has now stepped up, with a debate on the issue in the House of Commons and an accompanying 'digital debate' organised by the House of Commons via Facebook. Both of these debates were initiated by the MP Steve McCabe, with whom Sarah met last year to discuss problems with IVF funding. He opened the debate in the Commons by referring to the latest audit of fertility services carried out by Sarah and her colleagues.

Nicola Blackwood, Minister for Public Health and Innovation, discusses the public funding of fertility treatment in a House of Commons debate The debate concluded with the following welcome statement by Nicola Blackwood, the Government's Minister for Public Health and Innovation:

'It is the Government’s view that infertility is a serious medical condition. Those suffering from infertility who meet the criteria in the NICE fertility guidelines for NHS-funded treatment should be able to seek that treatment. We do not agree that clinical infertility should not be part of a comprehensive national health service. Reflecting on the strength of feeling expressed today, I will be writing to NHS England to ask that it communicates clearly to CCGs the expectation that NICE fertility guidelines should be followed by all.'


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'Another key event that Sarah attended recently was the launch of the Francis Crick Institute's remarkable new £650million facility in London (see this video for a sense of its scale). The Group Leader of the Crick's Human Embryo and Stem Cell Laboratory, Dr Kathy Niakan, is the first researcher licensed by the UK regulator to use genome editing in human embryo research. Dr Niakan discussed this work at PET's recent 'Rethinking the Ethics of Embryo Research' conference.

Professor Bruce Whitelaw, Head of Developmental Biology at the University of Edinburgh's Roslin Institute and speaker at the Progress Educational Trust conference 'Rethinking the Ethics of Embryo Research: Genome Editing, 14 Days and Beyond' PET has a longstanding interest in genome editing - Sandy Starr attended a recent event organised by the Nuffield Council on Bioethics to launch its new ethical review of genome editing (that event has been reviewed on BioNews here), and he went on to produce and chair a debate entitled 'Genome Editing: Should We Change the Building Blocks of Life?' at the Battle of Ideas festival held at the Barbican Centre. Speakers at the Battle Of Ideas debate included the Roslin Institute's Head of Developmental Biology Professor Bruce Whitelaw, who also discussed genome editing on a panel alongside Dr Niakan at PET's conference.

PET will shortly be undertaking a new project about the public understanding of genome editing in collaboration with Genetic Alliance UK, a charity which has been exploring patient attitudes towards this technology. Watch this space for further details.


Finally, PET has been going through media coverage of some of the other public events that it held towards the end of 2016, besides its embryo research conference.

Don't forget that PET's next public event is taking place in London on the evening of Wednesday 29 March. To book your free place, email

FREE EVENT
Fertility Treatment Add-Ons: Do They Add Up?

London
29 March 2017
Details HERE

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