This week at the Progress Educational Trust (10 July 2018)

The Progress Educational Trust (PET) is delighted to announce a packed new programme of public events running from now until the end of the year, culminating in the charity's 2018 Annual Conference.

Please email sstarr@progress.org.uk with bookings or enquiries regarding any of the events listed below.

• 'How Do We Make Genomics Everybody's Business?' is a free-to-attend event taking place in Manchester on the evening of Wednesday 5 September. See here for details.

  PET is producing this event in partnership with Genomics England and forms part of the Genomics Conversation, discussing the UK's 100,000 Genomes Project and the imminent launch of the new national NHS Genomic Medicine Service. Speakers include Professor Dame Sue Hill, Professor Nalin Thakkar and Vivienne Parry.

  This follows the success of the recent PET event 'With Great Genomic Data Comes Great Responsibility' (read a synopsis of that event here) and of last year's PET events marking the launch of the Chief Medical Officer's Generation Genome report (watch films of those events here).

• 'Modern Surrogacy Needs a Modern Law: How Should We Regulate Surrogacy in the 21st Century?' is a free-to-attend event taking place in Edinburgh on the evening of Thursday 27 September. See here for details.

  This event is supported by the Scottish Government. Speakers include Dr Kirsty Horsey, Dr Agomoni Ganguli Mitra and Robert Gilmour.

• 'Whose Genome Is It Anyway? Big Data and Your DNA' is a free-to-attend event taking place in Edinburgh on the evening of Wednesday 10 October.

  'What Is the Value of Our Genomes - to Us, to Our Families, to the Future of Medicine?' is a free-to-attend event taking place in Cardiff on the evening of Thursday 15 November.

  Further details of these two events will be announced here shortly.

• 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?' is PET's 2018 Annual Conference, taking place all day in London on Wednesday 5 December.

  A stellar lineup of speakers and chairs has already been confirmed for this conference including Professor Emily Jackson, Dr Roy Farquharson, Natalie Gamble, James Lawford Davies, Professor Ellie Lee, Professor Christian de Geyter, Satu Rautakallio-Hokkanen, Dr Roger Highfield, Dr Kylie Baldwin and Professor Robert Spaczyński.

  There is an EARLY BIRD DISCOUNT on the standard fee for full-day attendance, if you book your place before 14 September. See here for details.

Meanwhile, PET is involved in several events and initiatives marking the 40th birthday of the world's first IVF baby Louise Brown (pictured below with PET Director Sarah Norcross).

• PET will have an interactive exhibit, developed from its recent 'Basic Understanding of Genome Editing' project, at the upcoming event 'IVF at 40'. Attendance is free, but advance booking is required - book places here.

  This is taking place at the Science Museum in London on the evening of Wednesday 25 July, and is being chaired by Dr Roger Highfield (who will subsequently chair a session at PET's 'Make Do or Amend' conference).

  Besides Louise Brown and Dr Roger Highfield, the event will also feature Professor Roger Gosden, a former student of IVF pioneer Professor Sir Robert Edwards who went on to become a fertility expert - and a historian of IVF - in his own right.

• The 'IVF at 40' event accompanies a free-to-attend exhibition entitled 'IVF: 6 Million Babies Later', which is running in the 'Who Am I?' gallery of the Science Museum until November.

  In conjunction with the event and the exhibition, Dr Roger Highfield has interviewed PET's Patron - Baroness Mary Warnock - about how she and her colleagues built the foundations of today's IVF and embryo research regulation.

  Watch a film of that interview here, and read Dr Highfield's account of Baroness Warnock's work - in particular, her recommendation of a 14-day limit on human embryo research, a limit which is still upheld in law today - here.

  The launch of the 'IVF: 6 Million Babies Later' exhibition was attended by PET's Legal Editor, Jennifer Willows, and is discussed in this Science Museum article. A follow-up article discusses the often overlooked role of Jean Purdy in pioneering IVF, alongside Professor Sir Robert Edwards and Dr Patrick Steptoe (all three of them sadly now deceased).

• Besides its work with the Science Museum on the beginnings of IVF, PET was also joint organiser of a recent event at the Cheltenham Science Festival entitled 'The Birth of IVF', which was chaired by PET Trustee Professor Allan Pacey.

  Speakers included Sarah Norcross and also Dr Kay Elder - who previously worked alongside Edwards, Steptoe and Purdy, and who is now Senior Research Scientist at the fertility clinic they founded (Bourn Hall).

  At this event Dr Elder revealed the identity of a previously anonymous benefactor whose funding was crucial to the work that led to Louise Brown's birth. This revelation was then reported in the Daily Mail and in The Times.

Elsewhere, PET continues its campaigning work addressing the unhappy fact that in the UK - the very country where IVF was pioneered - fertility patients often find it difficult or impossible to access NHS-funded IVF treatment.

• PET Director Sarah Norcross met recently with Jackie Doyle-Price, Conservative MP for Thurrock and the Health Minister responsible for fertility, to discuss the failure of many clinical commissioning groups (CCGs) to offer the number of NHS-funded IVF cycles recommended by the National Institute for Health and Care Excellence (NICE).

  Following this meeting the Minister said the following, in response to a question in the House of Commons: 'We are very clear. We expect all CCGs to honour the NICE guidelines. I am very cross that CCGs tend to view IVF services as low-hanging fruit with which to make cuts. That is totally unacceptable and I will be taking steps to remind them of that.'

  This statement by the Minister was subsequently played on BBC Essex, followed by an interview with Sarah Norcross. In the interview, Sarah said: 'Frankly, the whole thing is a mess and needs sorting out. I'm hoping that Jackie is the woman for the job.'. Listen to the whole 10-minute item here.

• PET has also been supporting and briefing Steve McCabe, Labour MP for Birmingham Selly Oak, who has introduced an Access to Fertility Services Bill in Parliament in an attempt to end the IVF postcode lottery.

  Steve has played a crucial role in bringing this issue to the attention of politicians, having previously initiated a debate on this subject in Parliament.

  Sarah went to the Houses of Parliament to attend the First Reading of the new Bill. It is due to receive its Second Reading in November this year.

• Meanwhile, Sarah is quoted on the subject of IVF funding in the British Medical Journal, in an article about PET's recent event 'The Real Cost of IVF'. Sarah also wrote an article of her own about this event, entitled 'What's the Real Cost of IVF?', published in the Summer 2018 edition of Affinity - the magazine of PET's fellow charity Fertility Network UK.

  Comments made by two of the speakers at the 'Real Cost of IVF' event - Sally Cheshire (Chair of the Human Fertilisation and Embryology Authority) and Professor Lesley Regan (President of the Royal College of Obstetricians and Gynaecologists) - have been reported in the Daily Mail and in two articles in the Independent (one focusing on claims made by overseas fertility clinics and one focusing on research into whether acupuncture improves IVF success rates).

  A synopsis of what was discussed at the 'Real Cost of IVF' event can be found in PET's flagship publication BioNews, to which you can subscribe for free here.

• Additionally, PET has been producing fertility-related events in Scotland with the support of the Scottish Government.

  The first of these was a packed event in Edinburgh entitled 'Time Waits for No Man: The Impact of Age on Male Fertility'. Comments made by speakers at this event have been reported in the Daily Mail and in the Sheffield Star, and a synopsis of the event has been published in BioNews.

  This was followed by an event in Glasgow entitled 'From Acupuncture to Yoga: Can Lifestyle Choices Improve the Odds of IVF Working for You?'. Again, a synopsis of the event has been published in BioNews.

As well as producing its own events, PET continues to be involved in a wide variety of fertility-related events organised by others.

• Sarah Norcross and PET Communications Manager Sandy Starr were both panel speakers at Fertility Fest, a week-long arts festival at London's Bush Theatre. Sarah spoke at a session entitled 'The Business of Fertility' - listen to a podcast of that discussion here - while Sandy spoke at a session entitled 'The Future of Fertility'.

• Sarah gave a presentation on 'Fertility Funding' at the World Congress of the International Society for Mild Approaches in Assisted Reproduction (held at the Royal College of Obstetricians and Gynaecologists in London).

• Sarah also chaired the opening plenary session at 'Reproduction and the Law: Transformations, Responsibilities and Uncertainties in the 21st Century', the Annual Conference of the British Sociological Association's Human Reproduction Study Group (held at De Montfort University in Leicester).

• PET exhibited at the Annual Conference of the UK's fertility regulator, the Human Fertilisation and Embryology Authority. The Chair of that organisation, Sally Cheshire, referred in her keynote address to PET's work and to last year's PET event 'Fertility Treatment Add-Ons: Do They Add Up?'.

• PET also exhibited at the Manchester Fertility Show, an event attended by members of the public seeking fertility-related information and advice, where Sarah was a panel speaker at a session entitled 'How to Make Informed Choices to Help You on Your Fertility Journey'.

• Sarah and Sandy attended an event in Parliament hosted by Baroness Dianne Hayter, to mark the 25th anniversary of PET's fellow charity Donor Conception Network.

Meanwhile, PET remains at the forefront of scientific, legal and ethical discussion of genome editing.

• PET's Sandy Starr has written the lead paper - entitled 'How to Talk About Genome Editing' - in the June 2018 edition of the British Medical Bulletin.

  This paper - which is based on a presentation that Sandy gave at PET's most recent Annual Conference - discusses and develops the findings of the recent 'Basic Understanding of Genome Editing' project, conducted jointly by PET and its fellow charity Genetic Alliance UK.

  PET is extremely grateful to the funder of that project, the Wellcome Trust, for making it possible to publish Sandy's new paper on an open access basis. This means that anyone can read the paper for free online.

  Besides Sandy's paper, PET is also pleased to see the findings of the 'Basic Understanding of Genome Editing' project being used and promoted as a resource by a number of other organisations around the world - by Health Education England, by the Association for Responsible Research and Innovation in Genome Editing and by Ethics and Integrity.

• Sandy and PET/BioNews Legal Editor Jennifer Willows discussed genome editing at 'Back to the Future: From Genetics to Medicine', a public engagement event attended by hundreds of school pupils, organised by the British Society for Gene and Cell Therapy (BSGCT) and held at Oxford's beautiful Museum of Natural History.

  Sandy and Jennifer gave a presentation at this event entitled 'Ethical Distinctions in Genome Editing: Laboratory and Clinic, Germline and Soma, Treatment and Enhancement'. They also manned an exhibition stand where pupils and museum visitors flocked to participate in an applied ethics exercise developed from the 'Basic Understanding of Genome Editing' project.

  Jennifer can be seen leading pupils through this exercise in one of the photos accompanying the BSGCT's report of the event.

• Sandy attended a Royal Society conference entitled 'The CRISPR Revolution: Changing Life'. There, he had a welcome opportunity to discuss the findings of the 'Basic Understanding of Genome Editing' project with one of the pioneers of the CRISPR approach to genome editing, Professor Jennifer Doudna.

  On the same day, Sandy attended a Royal Society press briefing to launch the report Potential Uses for Genetic Technologies. This report and its appendices offer fascinating insights into public attitudes to genome editing and related technologies, and make for interesting reading alongside the findings of PET's project.

  PET's Patron Baroness Mary Warnock has responded to the report with an article in the Observer.

• PET has been involved in recent work on genomics and genome editing by the Science and Technology Committees of the House of Commons and the House of Lords.

  The Commons Committee published Genomics and Genome Editing in the NHS, a report of an inquiry to which PET had submitted a response. Sarah Norcross, quoted in a BioNews article about the report, welcomed its findings and said that 'taking the initiative will help to ensure that the UK attracts funding for pioneering research, and retains its genome editing expertise during and after Brexit'.

  Subsequently, Sandy attended a briefing to launch a report from the Lords Committee entitled Life Sciences Industrial Strategy: Who's Driving the Bus?. This report raises questions about the UK Government's Industrial Strategy, a topic that was explored at PET's recent event 'Putting Your Genome to Work: For the NHS, for Industry, for the UK Post-Brexit'.

• Sandy gave a lecture entitled 'Genetics, Genomics and Society: Determinism vs Free Will' at the Living Freedom residential school run by the Academy of Ideas - a podcast of that lecture can be listened to or downloaded here - and he attended the World Precision Medicine Congress and the World Advanced Therapies and Regenerative Medicine Congress, both of which were held in London.

• PET Trustee Dr Jess Buxton attended the London launch of a pilot study by the UK arm of the Personal Genome Project. As Jess explains in a review of the launch event for BioNews, this project is different in many respects from the UK's 100,000 Genomes Project, although both projects are liable to be discussed at PET's 26 June event 'With Great Genomic Data Comes Great Responsibility'.

  Jess has also written an article for The Conversation, about research suggesting that harmful genetic mutations may be less common than previously thought'.