This week at the Progress Educational Trust (19 August 2019)

The Progress Educational Trust (PET) is delighted to announce that its next two free-to-attend evening events will be:

• 'Everything You Wanted to Know about Genomics but Were Afraid to Ask'

  Taking place in Manchester on the evening of Wednesday 4 September 2019.

  Produced in partnership with Health Education England and its Genomics Education Programme.

  Chaired by Sarah Norcross and Dr Anneke Seller, with speakers including Professor Jill Clayton-Smith, Elizabeth Alexander, Dr Simon Ramsden and Sabine Starr.

  To reserve your free place(s), register here.

• 'Can Law Reform Solve Surrogacy's Problems?'

  Taking place in Edinburgh on the evening of Tuesday 24 September 2019.

  Produced in partnership with the Scottish Government.

  Chaired by Robert Gilmour, with speakers including Sarah Jones, Dr Katarina Trimmings and Dr Sharon Zahra.

  To reserve your free place(s), register here.

PET has also announced preliminary details of its 2019 Annual Conference, which is taking place in London all day on Wednesday 4 December 2019.

The theme of this year's conference is 'Reality Check: A Realistic Look at Assisted Reproduction'. Conference speakers already confirmed include:

• Sally Cheshire (Chair of the HFEA, Chair of HEE North and Deputy Chair of CAFCASS)

• Dr Jane Stewart (Chair of the British Fertility Society, and Head of the Newcastle Fertility Centre)

• Dr Raj Mathur (Consultant Gynaecologist and Lead for Reproductive Medicine at St Mary's Hospital and at Manchester Fertility)

• Professor Geeta Nargund (Founder and Medical Director of CREATE Fertility and of ABC IVF, and President of ISMAAR)

• Professor Nick Macklon (Medical Director of the London Women's Clinic, and Professor of Obstetrics and Gynaecology at the University of Copenhagen and at Zealand University Hospital)

• Dr Roger Sturmey (Senior Lecturer in Reproductive Medicine, and Principal Investigator, at Hull York Medical School)

• Professor Bobbie Farsides (Professor of Clinical and Biomedical Ethics at Brighton and Sussex Medical School)

• Professor Christopher Barratt (Professor of Reproductive Medicine, and Head of Systems Medicine, at the University of Dundee)

Further details will be announced shortly. In the meantime, please save the date and email sstarr@progress.org.uk to register your interest.

Meanwhile, you can watch a film of highights from PET's most recent public event, 'Anonymous No More? Donor Conception and Direct-to-Consumer DNA Testing' (if you cannot see the film below, click here to view it).

The event is also the subject of a report in Focus on Reproduction, the magazine of the European Society of Human Reproduction and Embryology (ESHRE).

In other news, PET Director Sarah Norcross has been busy recently speaking at conferences and appearing in the print and broadcast media.

• Sarah gave the concluding presentation (via videoconference) at the inaugural meeting, in Washington DC, of the International Commission on the Clinical Use of Human Germline Genome Editing.

  This body, which is led by the USA's National Academies and by the UK's Royal Society, is seeking to develop a framework within which to consider and regulate the use of heritable genome editing in humans.

  In her presentation - entitled 'Genome Editing: Finding a Way Forward' - Sarah discussed PET's 'Basic Understanding of Genome Editing' project, as well as the charity's extensive public engagement and policy work on genome editing, mitochondrial donation and related technologies.

  Sarah's presentation is discussed in a report on the meeting by Medscape.

• Sarah criticised the decision by Cambridgeshire and Peterborough's Clinical Commissioning Group to suspend indefinitely the provision of NHS-funded IVF treatment. This decision means that tragically, patients in the city where IVF was originally pioneered can no longer access IVF.

  Shortly before the Clinical Commissioning Group's decision was announced, Sarah was interviewed about the matter by BBC Radio Cambridgeshire's Andy Lake. Listen to the interview here (it begins at the 2:10:07 mark).

  After the decision was announced, Sarah responded in HuffPost, where she said:

  'A woman in Cambridge is no less deserving of treatment than one in Bury St Edmonds or Newcastle. When about 200 CCGs can offer at least some form of service one has to wonder why five cannot find the budget to do so.'

  Sarah also responded in the Cambridge Independent and in the Eastern Daily Press, where she said:

  'Fertility patients in Cambridgeshire and Peterborough will be devastated to hear that the clinical commissioning group has decided to remove access to NHS IVF indefinitely - despite the Government's warning that it is unacceptable to do so and that the IVF postcode lottery blights patients' lives and damages the NHS' reputation.'

• Sarah discussed the UK Government's policy concerning so-called 'genomic volunteers'. Originally, the Government planned to offer healthy people the opportunity to pay to have their genomes sequenced and studied. Now this policy has changed, with the result that participants will have their genomes sequenced and studied for free.

  The change of policy was reported in the Guardian newspaper, where Sarah said:

  'The scheme threatened to create an inherently inequitable two-tier NHS, with people who can pay able to access genome sequencing and any benefits it may bring, while those who can't afford the fee are denied these benefits. Now that payment has been removed from the equation, and the scheme has been combined with a programme involving the recruitment of up to five million healthy volunteers, it is more important than ever for the government to be clear about how and why people's genomic data is obtained from them and results explained to them, minimising any potential for unnecessary worry.'

• Sarah discussed widely reported claims that fertility treatments now being sold to patients can delay the menopause.

  These treatments were discussed in HuffPost, where Sarah said:

  'There is only limited evidence that these surgical procedures, which were originally designed to preserve the fertility of young women undergoing cancer treatment, might successfully extend a woman's ability to have children after the age of menopause. More research is needed into the safety of increasing the number of fertile years available to women, and in the meantime women should be cautious about paying for this experimental treatment.'

• Sarah was involved in the Summer Conference of the Health Leadership Network, an organisation which brings together people who work in health in the Government, the Civil Service and the NHS.

  The conference was held at the Government's Department for Business, Energy and Industrial Strategy, with speakers including Health Minister Matt Hancock. Sarah chaired a session entitled 'Personalised Medicine in 2019 and Beyond: Opportunities and Challenges'.

  The panel she chaired included speakers Professor Dame Sue Hill (Chief Scientific Officer at NHS England), Dr Mark Bale (Head of Science Partnerships at Genomics England), Jillian Hastings Ward (Chair of the 100,000 Genomes Project's Participant Panel) and Dr Mark Kroese (Director of the PHG Foundation).

• Sarah went to Vienna to give two presentations at ESHRE's Annual Meeting, which sees more than 12,000 attendees from more than 130 countries come together to discuss reproductive medicine and science.

  First, Sarah spoke at a session entitled 'Navigating Between Hope and Hype in Science Communication'. Then, she was the main speaker at an event hosted by CooperSurgical, where her presentation was entitled 'Cinderella: A Poor Prognosis Patient'.

  Sarah discusses the latter presentation in the following interview (if you cannot see the interview below, click here to view it).