This week at the Progress Educational Trust (18 July 2017)
The Progress Educational Trust (PET) is delighted to announce that its next free-to-attend public event - taking place in Manchester on the evening of Monday 11 September 2017 - will be entitled 'What Does Consent Mean for Generation Genome?', and will focus on genomic medicine and consent to the use of genomic data.
The event will build on discussion of these issues in the new Generation Genome report from the UK's Chief Medical Officer, Professor Dame Sally Davies, and will form part of the Genomics Conversation programme of activities led by Genomics England. The event is taking place during NHS England's Health and Care Innovation Expo in Manchester, but attendance is open to all (regardless of whether or not you are registered to attend the Expo).
Ahead of the discussion, Professor Sue Hill - Chief Scientific Officer at NHS England - has written an article for PET's flagship publication BioNews entitled 'Delivering the Genomic Dream across the NHS'.
Further details of the event will be announced here shortly. For now, please save the date and please email to register your interest in attending.
Also, be sure to follow the Twitter hashtag #PETgenomic
Meanwhile, PET has been going through feedback from its last public event with Genomics England, where the Generation Genome report was launched. The event - 'What Next for Genomics? Providing Answers, Changing Lives, Transforming the NHS' - was chaired by the Wellcome Trust's Director of Communications, Mark Henderson, and saw Professor Dame Sally Davies and Professor Sue Hill discuss the findings of the report.
Professors Davies and Hill were joined on the panel by two other experts who have contributed chapters to the report - Professor Michael Parker (Director of the University of Oxford's Ethox Centre), and Professor Sir Stephen O'Rahilly (Head of Clinical Biochemistry at the University of Cambridge).
The event was packed with attendees ranging from senior figures in policy and healthcare, to patients and patient organisations, to researchers, students and even school pupils (from Notting Hill and Ealing High School and Peter Symonds College). People who contributed to the discussion from the floor included Jayne Spink (Chief Executive of Genetic Alliance UK), Professor Sir John Savill (Chief Executive of the Medical Research Council) and Dr Ron Zimmern (founder and Chair of the PHG Foundation).
Media coverage of the event included the following articles:
You can read more about the event and about the Chief Medical Officer's report on BioNews, in this comment piece and in this news piece. There was also lively social media activity before, during and after the event, which has been compiled via Storify here.
Subscribe to BioNews for free here if you'd like to receive these sorts of articles in your inbox every week, together with all the latest news and views on genetics, fertility and embryo/stem cell research.
In addition to its public events with Genomics England, PET has also opened booking for its 2017 Annual Conference, which is entitled 'Crossing Frontiers: Moving the Boundaries of Human Reproduction' and is taking place in London on Friday 8 December 2017. There is a special early bird discount on the standard attendance fee if you book your place before 15 September - see here for details.
The conference will explore the changing boundaries of reproductive medicine and research in an age of genome editing, in vitro gametogenesis (IVG) and synthetic human entities with embryo-like features (SHEEFs). Speakers confirmed to date include Professor Azim Surani (Director of Germline and Epigenomics Research at the Gurdon Institute) and Dr Anna Smajdor (Associate Professor of Practical Philosophy at the University of Oslo).
In other news, PET Director Sarah Norcross has been in the media criticising cuts to the public funding of fertility treatment, in her capacity as Co-Chair of the campaigning organisation Fertility Fairness.
Three clinical commissioning groups (CCGs) - Redditch and Bromsgrove, South Worcestershire, and Wyre Forest - have cut the number of IVF cycles they offer from two to one, in defiance of the National Institute for Health and Care Excellence recommendation that three full cycles of IVF be offered to women under 40. Sarah discussed these developments with Elliott Webb on BBC Hereford and Worcester - listen to the interview here.
At the same time, another CCG - Herts Valleys - has suspended all NHS-funded IVF for six months, and is considering putting a permanent stop to its fertility services. Sarah gave two interviews to BBC Three Counties Radio about this dire situation, speaking to Jonathan Vernon-Smith and Roberto Perrone - listen here and here.
Sarah has also been quoted by the Telegraph discussing a different aspect of fertility treatment - namely, 'add-ons' to IVF, which were the subject of the recent PET debate 'Fertility Treatment Add-Ons: Do They Add Up?'. Sarah told the newspaper:
'Fertility clinics are dealing with patients at an emotive time and when you're about to spend £5,000 on standard IVF, it's tempting to spend an extra £500 on something that may just help. Fertility patients, many only used to the NHS, suddenly find themselves faced with a doctor wearing two hats - the medical hat and the businessman hat, which adds another element to the doctor/patient relationship. But if these are still experimental treatments, yet to be scientifically proven, why should the patients pay for them? Why don't these private clinics, or the manufacturers, invest in research programmes?'
PET's Chair of Trustees Fiona Fox has also been busy in the media lately, and has been quoted in a Financial Times article about the growth of the science communication industry. Elsewhere, she chaired a panel of leading figures in science journalism at the concluding session - entitled 'Have We Really Had Enough of Experts?' - of the annual Press Officers' Conference organised jointly by the Medical Research Council and the Wellcome Trust.
Another session at the Press Officers' Conference, 'Videos and Storytelling', was produced and chaired by PET Communications Officer Sandy Starr. His session focused on the way organisations use online videos to engage with the media and the public, and his speaker panel included Dr Ben Thompson, Rob Eagle and Charlotte Stoddart (the heads of multimedia at the Microbiology Society, University College London and the journal Nature respectively).
One more familiar face at the conference - speaking on the panel in the opening session, 'Documentaries' - was Deborah Cohen, who runs the BBC Science Radio Unit. Several recent programmes produced by Deborah for BBC Radio 4 and the BBC World Service have covered PET's landmark conference 'Rethinking the Ethics of Embryo Research: Genome Editing, 14 Days and Beyond', and have featured interviews with conference speakers (including PET's Patron Baroness Mary Warnock). You can listen to these programmes here, here and here.
Besides working on the Press Officers' Conference, Sandy Starr has also been judging the Gina Owens Memorial Prize at the National Final of the Debating Matters sixth-form debating competition, organised by the Institute of Ideas. This prize - awarded every year to the school pupil with the sharpest and wittiest arguments - was won by Rowena Cantley from the Royal School Armagh.
Several of the motions debated by pupils at this year's National Final were relevant to PET's work - especially 'Medical data sharing is a threat to our privacy', a motion which was defended and opposed with equal vigour, and which relates to PET's upcoming 'What Does Consent Mean for Generation Genome?' event.
The National Final also included an 'inspiration event' chaired by Sandy to gave pupils a well-earned break between debates, where the guest speaker was conservationist and broadcaster Simon Watt.
PET/BioNews Legal Editor Jennifer Willows has been equally busy, attending a conference at University College London entitled 'Personal Genetic Testing: Challenges and Benefits in and Beyond the Clinic'. This event raised some of the questions that PET will be exploring in depth at 'What Does Consent Mean for Generation Genome?' in Manchester on 11 September.
Meanwhile, PET/BioNewsScience Editor Shaoni Bhattacharya has written an article for Arts and Humanities as Higher Education, exploring the history of the concept of hubris. The article also discusses a recent conference Shaoni attended at the Royal Society of Medicine, which was entitled 'Power, Gender and Hubris: Success and Arrogance as Risks to Leadership in Healthcare and Beyond'.
Elsewhere, Shaoni has written New Scientist magazine about a blue whale skeleton which dominated an exhibition at the Natural History Museum, and about a striking production of Bertolt Brecht's play Life of Galileo.