This week at the Progress Educational Trust (15 January 2017)
The Progress Educational Trust (PET)'s historic conference 'Rethinking the Ethics of Embryo Research: Genome Editing, 14 Days and Beyond' is being followed by a two-part programme on BBC Radio 4, presented by health journalist Matthew Hill, entitled 'Revisiting the 14-Day Rule'. The first half-hour episode is being broadcast at 11am on Tuesday 17 January, while the second half-hour episode is being broadcast at 11am on Tuesday 24 January.
The programme focuses, as did PET's conference, on the longstanding 14-day limit on human embryo research and whether this limit should be reviewed in light of recent developments. PET has made a submission to the Science and Technology Committee of the House of Commons, proposing a new Parliamentary inquiry into the 14-day rule, and will be discussing the matter before the Committee in February.
Parts of Radio 4's programme were recorded at PET's conference and interviewees include PET's Patron Baroness Mary Warnock, who was originally responsible for proposing the 14-day limit in her landmark report of 1984. PET has published a new article by Baroness Warnock entitled 'Should the 14-day limit on human embryo research be extended?', to mark the occasion of her being awarded the highest honour in the New Year Honours List.
Baroness Warnock's article covers themes she discussed in her Keynote Address at the opening session of the conference, which was chaired by PET Director Sarah Norcross. Other conference-related articles published by PET in recent weeks, which can be found on the charity's flagship publication BioNews, include:
Subscribe to BioNews for free here to be kept updated with further articles.
Other speakers at PET's conference have also been in the headlines. Professor Magdalena Zernicka-Goetz - leader of recent research in which human embryos were cultured in vitro for 13 days, thereby demonstrating that it is possible to reach (and perhaps exceed) the 14-day limit - has seen this work win the vote for the 'People's Choice' category of Science magazine's '2016 Breakthrough of the Year'.
You can watch Professor Zernicka-Goetz discuss her breakthrough in this new video from the University of Cambridge. Her work is also mentioned in the Guardian's piece on '2017’s Big Ideas', in a section written by by the Wellcome Trust's Director of Science Dr Jim Smith. Dr Smith received a knighthood in the New Year Honours List, and is one of the interviewees in the 'Revisiting the 14-Day Rule' programme.
Another speaker at PET's conference - Dr Kathy Niakan, the first researcher licensed by the UK regulator to use genome editing in human embryo research - is one of the 'CRISPR Pioneers' to be shortlisted for TIME magazine's 'Person of the Year', having previously been named one of the world's 100 Most Influential People by TIME.
Dr Niakan has also been included in MomMD's list of 2016's top 10 influential women and Microsoft Network's list of 2016's top 20 powerful women, as well as being nominated for a Wired/Audi Innovation Award. Most recently, she has discussed her work in Newsweek's in-depth article on 'How scientists in Britain are deciding the future of humanity'.
After speaking at PET's conference, Professor Zernicka-Goetz and Dr Niakan discussed the 14-day limit at a Nuffield Council on Bioethics workshop on 'Statutory time limit for maintaining human embryos in culture'. PET Communications Officer Sandy Starr also participated in this workshop, and a report of the proceedings will be published by the Nuffield Council in the near future.
Meanwhile, PET's conference has been the subject of an item on Radio 4's Today programme as well as extensive coverage throughout the national print and broadcast media. Follow the links below to read and listen.
Additionally, some of the speakers at PET's conference have published material from their presentations online.
Finally, PET was gratified to discover that its conference the previous year is now the subject of an academic paper in the latest issue of the journal Engaging Science, Technology, and Society. That paper can be downloaded here.
In other news, PET is delighted to announce that its next free-to-attend public event will be 'Fertility Treatment Add-Ons: Do They Add Up?', taking place at Royal College of Obstetricians and Gynaecologists from 6pm on Wednesday 29 March.
Interviewees in the programme include the Chair of the BFS, Professor Adam Balen (who has responded to the programme's criticisms of fertility doctors in this BioNews article) and Dr Simon Fishel (who spoke at PET's recent conference and has been interviewed for Radio 4's follow-up programme).
PET Director Sarah Norcross has been interviewed about the Panorama programme in the Daily Telegraph and on BBC Sussex, while PET Trustee Dr Sue Avery has been interviewed about the programme by BBC News.
Another PET Trustee - John Parsons - gave his views on fertility treatment 'add-ons' in the Daily Mail prior to the broadcast of the programme and in the Telegraph afterwards. The programme includes footage from the Fertility Show, where PET exhibits every year and where John Parsons recently gave a seminar entitled 'How to Keep Costs Down - Do You Really Need Those Add-Ons?'. When this issue was in the news previously, John Parsons and Adam Balen were quoted in the Independent.
To book your free place at PET's 29 March event, and to have your say on the contentious issue of IVF add-ons, email
Another major focus of PET's recent activities has been mitochondrial donation, with the charity continuing its decade-long work campaigning for 'three-person IVF' - techniques to avoid the transmission of mitochondrial disease from mother to child - to be made available to patients.
2016 concluded with a decisive and welcome step towards this goal. The Human Fertilisation and Embryology Authority (HFEA) decided, in light of the latest scientific evidence, that it will now consider applications for licences to provide mitochondrial donation to appropriate patients.
PET Communications Officer Sandy Starr attended the HFEA meeting where this decision was made. He also attended a House of Lords briefing on the decision in Parliament, chaired by Baroness Elizabeth Barker with speakers including mitochondrial donation pioneer Professor Sir Doug Turnbull.
Meanwhile, PET Director Sarah Norcross was interviewed about the decision on Sky News. This was one of many interviews that Sarah gave on this topic throughout 2016 - previously, she and Professor Turnbull were interviewed on BBC Radio 4's Today programme (responding to the news that a child born in Mexico has been conceived via mitochondrial donation) and she was interviewed in The Times (responding to the news that mitochondrial donation has been used as an unorthodox form of fertility treatment in Ukraine).
PET could not be more pleased that Professor Turnbull and his colleagues can now finally apply to the HFEA for a licence to use this technology for its intended purpose - namely, avoiding mitochondrial disease. Baroness Warnock also supports this outcome, as she explained to Shaun Ley on the BBC Radio 4 programme World at One when the issue was being debated in Parliament.
One person who deserves particular credit for progress in this area - and to whom tribute was paid by Baroness Barker and Professor Turnbull at the recent House of Lords briefing - is Lord John Walton, who died in 2016 at the age of 93. As a scientist in the 1950s he pioneered the field of myology, thereby laying the groundwork for our understanding of mitochondrial disease. Then in more recent years, as a Parliamentarian, he played a key role in changing the law to permit mitochondrial donation. You can read about his life and work on BioNews here.
The latest Fertility Fairness audit of fertility services shows that only 2% of Clinical Commissioning Groups are following national guidance on NHS funding. Sarah spoke to BBC Essex's Sadie Nine about fertility patients who begin 2017 without any access to publicly funded IVF, explaining that 'only four Clinical Commissioning Groups out of over 200 are not offering any service and three of those are in Essex'. Listen to the interview here.
Sarah has been interviewed by ITV News about the funding situation in Essex (watch that item here), and has spoken to BBC Stoke's Liz Ellis about proposals to cut IVF funding in Cheshire (listen to the interview here). Together with her fellow Co-Chair of Fertility Fairness Susan Seenan, Sarah has also been interviewed in the Daily Telegraph about the fertility funding situation across the whole of the UK.
Sarah has given many other interviews about this topic in recent weeks, on national radio (speaking to BBC Radio 4's Nick Robinson, BBC Radio 5's Tony Livesey and Talk Radio's Julia Hartley-Brewer and Yasmeen Khan) and also on local radio (speaking to BBC Berkshire's Phil Kennedy, BBC Cambridgeshire's Dotty McLeod, BBC Devon's Janet Kipling, BBC Hereford and Worcester's Toni McDonald and Elliott Webb, BBC London's Eddie Nestor, BBC Surrey's Jamie Crick, BBC Tees' Mike Parr and BBC Three Counties' Justin Dealey and Roberto Perrone).
The campaign for access to publicly funded IVF has stepped up with an intervention from Nicola Blackwood, the Government's Minister for Public Health and Innovation, who says: 'I am very disappointed to learn that access to IVF treatment on the NHS has been reduced in some places and it is unacceptable that some clinical commissioning groups have stopped commissioning it completely. I would strongly encourage all CCGs to implement the NICE fertility guidelines in full.'
Fertility funding is now due to be debated in the House of Commons on Thursday 19 January. The House of Commons has also launched a digital debate on Facebook, which is open to the public and will feed into the Commons debate.
Another subject in PET's orbit in which Nicola Blackwood has taken a welcome interest is surrogacy. Mere days after assuming her ministerial post in 2016, she met with Sarah Norcross and PET Adviser Dr Kirsty Horsey to discuss the reform of surrogacy law. Then at the end of 2016, surrogacy law was the subject of a debate in the House of Lords scheduled by Baroness Elizabeth Barker, which Sarah and Kirsty watched from the public gallery.
Baroness Barker opened the debate by discussing the work of Mary Warnock, and went on to discuss 'leading researchers' in this area among whom she named Kirsty. A subsequent contribution to the debate by Viscount Janric Craigavon mentioned 'Sarah Norcross, the Director of the Progress Educational Trust' as someone who has been working 'to assist serious reform taking place on the basis of more accurate information and data'.
In her concluding statement, Baroness Carlyn Chisholm said that the Government had read the report Surrogacy in the UK: Mythbusting and Reform - written by a Working Group which includes Kirsty and Sarah - and had 'taken note of the changes to surrogacy legislation and policy that the report recommends'. Subscribe to BioNews to be kept informed of the latest developments in this area.