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The Progress Educational Trust podcast

Published by Progress Educational Trust

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  • Non-profit

PET (the Progress Educational Trust) is an independent charity that improves choices for people affected by infertility and genetic conditions. On this podcast, you can hear the latest PET discussions of scientific, ethical, legal and policy issues in fertility, genetics, genomics and embryo/stem cell research. These discussions feature experts and advocates from around the world, as well as contributions from patients and the broader public.

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Recent episodes

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  1. Donor Conception and Genetic Disease: Lessons to Be Learned from Donor 7069 from The Progress Educational Trust podcast, opens in a new tab

    Aug 12, 20261 hr 38 min

    This episode of the Progress Educational Trust ( PET ) podcast examines the case of a donor whose sperm was used to conceive at least 197 children in at least 14 countries , when he (unknowingly) carried a genetic mutation that causes cancer . The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Professor Allan Pacey (Professor of Andrology at the University of Manchester) ⚫ Dr Edwige Kasper (Cancer Geneticist at Rouen University Hospital, first brought the case of donor 7069 to professional and public attention) ⚫ Allan Toft Jacobsen (Chief Operating Officer at the European Sperm Bank) ⚫ Nanna Humle (Head of Quality at Born Donor Bank) ⚫ Rachel Cutting (Director of Compliance and Information at the Human Fertilisation and Embryology Authority) ⚫ Professor Lucy Frith (Professor of Bioethics and Health Research at the University of Manchester, and Principal Investigator at the ConnecteDNA project) ⚫ Nina Barnsley (Director of the Donor Conception Network, and contributor to information leaflets produced as part of the ConnecteDNA project) The case of Donor 7069 involves a cancer-causing mutation that is present in some, but not all, of the cells of the donor's body. When this happens, it means that a mutation may not be detectable via standard tests , of the sort that are usually used to check people's suitability to be donors of sperm or eggs. Some of the children who were conceived from this donor's sperm are already known to have developed cancer. Some of these children have died. The case raises many issues, including: ⚫ How donors of sperm and eggs are (and should be) tested . ⚫ What steps should be taken, if an incident such as this is discovered, and who should be held responsible for taking these steps. ⚫ What limits are (and should be) placed, nationally and internationally, on the number of children that can be conceived from the sperm of a single donor. In this podcast, experts and practitioners – including the cancer geneticist who first brought the case of donor 7069 to professional and public attention – explore the questions above, discussing how such cases should be dealt with once they come to light and how to reduce the risk of them occurring in the first place. PET is grateful to the Association of Reproductive and Clinical Scientists , the British Fertility Society , CooperSurgical and Theramex for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  2. Accessing Fertility Treatment: Challenges and Solutions for LGBTQ+ Communities from The Progress Educational Trust podcast, opens in a new tab

    Jul 20, 20261 hr 37 min

    This episode of the Progress Educational Trust ( PET ) podcast explores legal, practical and other challenges faced by LGBTQ+ people seeking fertility treatment and how these might be overcome. Is the evidence reassuring? Or are there reasons to be concerned? The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Kate Osborne MP (Chair of the All-Party Parliamentary Group for Fertility) ⚫ Dr Carolyn Wilson-Nash (Senior Lecturer in Marketing and Retail at the University of Stirling) ⚫ Dr Jennifer Takhar (Associate Professor of Consumer Culture at Côte d'Azur University) ⚫ Michael Johnson-Ellis (Cofounder of My Surrogacy Journey and of Ethica Fertility) ⚫ Dr Susie Bower-Brown (Principal Investigator at the 'Family Beyond the Binary' research project) ⚫ Dr Chloe He (Honorary Senior Research Fellow at University College London) ⚫ Natalie Gamble (Director of NGA Law and Founder of Brilliant Beginnings) PET is grateful to Born Donor Bank , Care Fertility , CooperSurgical , IBSA and the Senior Infertility Nurse Group for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  3. What Is the Impact of Fertility Treatment on the Health of Resulting Children? from The Progress Educational Trust podcast, opens in a new tab

    Jul 10, 20261 hr 20 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses what is known about the short-term and long-term health – both physical and psychological – of people who were conceived via IVF and related reproductive technologies. Is the evidence reassuring? Or are there reasons to be concerned? The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Professor Barbara Luke (Professor of Obstetrics and Gynaecology at Michigan State University) ⚫ Professor Alastair Sutcliffe (Professor of General Paediatrics at University College London) ⚫ Dr Faiza Afzal (Senior Research Fellow at University College London) ⚫ Professor Vasanti Jadva (Leader of the Reproduction and the Family Research Group at City St George's, University of London) PET is grateful to the Scottish Government for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  4. What Is the Impact of Fertility Treatment on Patient Health? from The Progress Educational Trust podcast, opens in a new tab

    Jun 26, 20261 hr 35 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses what is known about the impact of IVF – and assisted conception more broadly – on the physical and psychological health of patients . Is the evidence reassuring? Or are there reasons to be concerned? The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Dr Alina Pelikh (Senior Research Fellow in Demography at University College London) ⚫ Dr Jen Barcroft (Clinical Fellow in Reproductive Medicine at Imperial College Healthcare NHS Trust) ⚫ Dr Alice Domar (Chief Compassion Officer at Inception Fertility) PET is grateful to the Scottish Government for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  5. What Does the NICE Fertility Guideline Update Mean for You? from The Progress Educational Trust podcast, opens in a new tab

    Jun 9, 20261 hr 33 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses the newly updated Fertility Guideline published by the UK's National Institute for Health and Care Excellence ( NICE ). The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Dr Raj Mathur (Member of the Guideline Committee that developed the newly updated Fertility Guideline) ⚫ Professor Richard Anderson (Professor of Clinical Reproductive Science at the University of Edinburgh) ⚫ Sarah Norcross (Director of PET), speaking on behalf of Sharon Martin (Interim Chief Executive of the charity Fertility Network UK) ⚫ Katie Rollings (Founder and Chief Executive of the charity Fertility Action) ⚫ Anya Sizer (Trustee at the charity Fertility Alliance) Like every version of the Fertility Guideline published by NICE since 2004, the newly updated Guideline recommends that the NHS should 'offer an initial three full cycles of IVF treatment' to any woman – under 40 years of age – who needs them. The updated Guideline also retains a robust definition of what constitutes a 'full' cycle of IVF. In addition to this, the updated Guideline adds a new recommendation that if a woman 'is under 40 years and has not conceived after three full cycles of IVF treatment' , then commissioners and providers should 'consider up to three further full cycles of IVF treatment' . NICE's recommendation of three full NHS-funded cycles of IVF has been in place for more than 20 years, and yet has never been implemented across England. In fact, the latest data from the PET NHS Fertility Funding Tracker shows that the situation has been worsening. ⚫ 40 out of 42 integrated care boards (ICBs) in England currently fail to comply with the Guideline . ⚫ Of these 40 non-compliant ICBs, the majority – 29 – offer only one NHS-funded cycle of IVF , rather than the recommended three. ⚫ The situation is made even worse by inconsistencies in the eligibility criteria that various ICBs impose upon prospective fertility patients. In its Renewed Women's Health Strategy for England , the UK Government says that within the next two years, it will 'assess current provision of NHS-commissioned fertility services as a baseline to inform supporting material for every ICB to implement the new NICE guidelines in full' . Meanwhile, a commitment made by the preceding Government in its original Women's Health Strategy for England – to ensure that 'Female same-sex couples are able to access NHS-funded fertility services in a more equitable way' – has been quietly dropped from the Renewed Strategy. In light of all this, will the new update to the Guideline make a difference? In this podcast, leading patient advocates and fertility professionals – including a member of the Committee that developed the updated Guideline – discuss what the update means for them, and for you. PET is grateful to Merck for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  6. Male Infertility: Today's Insights, Tomorrow's Treatments from The Progress Educational Trust podcast, opens in a new tab

    May 18, 20261 hr 1 min

    This episode of the Progress Educational Trust ( PET ) podcast features researchers and practitioners at the forefront of tackling male infertility . Aspects discussed include current best practice , the latest insights , and pioneering research that could transform treatment of male infertility in future. The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Kevin McEleny (Chair of the British Fertility Society) ⚫ Professor Joris Veltman (Director of the Institute of Genetics and Cancer at the University of Edinburgh) ⚫ Professor Rod Mitchell (Principal Investigator of a pioneering fertility restoration project funded by the charity Children with Cancer UK) ⚫ Professor Sarah Martins da Silva (Professor of Reproduction and Fertility Medicine at the University of Dundee) Topics discussed in this podcast include: ⚫ Stress experienced by current and prospective fertility patients. ⚫ Stress experienced by practitioners/professionals in the fertility sector. ⚫ What can and should be done to address, or to avoid, stress-related problems. PET is grateful to the Scottish Government and the Society for Reproduction and Fertility for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  7. Fertility Treatment and Stress: Patients, Practitioners and Outcomes from The Progress Educational Trust podcast, opens in a new tab

    Apr 29, 20261 hr 21 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses causes and consequences of stress , in the context of (in)fertility and assisted conception . The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Dr Sinéad Currie (Lead at the Scottish Preconception Health Research Network) ⚫ Angela Pericleous-Smith (Chair of the British Infertility Counselling Association) ⚫ Dr Angela Lawson (Clinical and Forensic Psychologist) ⚫ Emma Haslett (Co-Host of the infertility/IVF podcast Big Fat Negative ) Topics discussed in this podcast include: ⚫ Stress experienced by current and prospective fertility patients. ⚫ Stress experienced by practitioners/professionals in the fertility sector. ⚫ What can and should be done to address, or to avoid, stress-related problems. PET is grateful to the Scottish Government for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  8. Ancestry, Ethnicity, IVF Outcomes: Why Do Some Patients Fare Better than Others? from The Progress Educational Trust podcast, opens in a new tab

    Apr 13, 20261 hr 30 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses disparities in IVF outcomes , and experiences of fertility treatment , between people with different ethnic backgrounds . The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Baroness Geeta Nargund (Labour Peer in the House of Lords and Member of the HFEA) ⚫ Dr Patricia Hamilton (Lecturer in Sociology at the University of York) ⚫ Professor Asif Muneer (Professor of Urology and Surgical Andrology at University College London) ⚫ Jonathan Luwagga (Ambassador and Peer Advocate at the Fertility Alliance) ⚫ Dr Edmond Edi-Osagie (Medical Director of Aurora Reproductive Healthcare) ⚫ Yvonne Hector-John (activist and author of the book 'Dreaming of a Life Unlived') Topics discussed in this podcast include data on ethnic diversity in fertility treatment published by the UK's fertility regulator, the Human Fertilisation and Embryology Authority ( HFEA ). PET is grateful to IBSA for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  9. Understanding Egg Donation: The Give and Take from The Progress Educational Trust podcast, opens in a new tab

    Mar 23, 20261 hr 27 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses the needs and interests of everyone involved in egg donation – including donors , recipients , donor-conceived people , fertility professionals , regulators and policymakers . The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Dr Jane Stewart (previously Head of the Newcastle Fertility Centre and Chair of the British Fertility Society) ⚫ Professor Nicky Hudson (Professor of Medical Sociology at Loughborough University) ⚫ Angela Pericleous-Smith (Chair of the British Infertility Counselling Association) ⚫ Sophie Cook (donor-conceived person, conceived with an egg from an anonymous donor) ⚫ Professor Mark Hanson (Emeritus Professor of Human Development and Health at the University of Southampton) Topics discussed in this podcast include a Parliamentary inquiry into egg donation and egg freezing , launched by the Women and Equalities Committee of the UK's House of Commons . PET is grateful to London Egg Bank for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  10. Fertility and the Workplace: Can Employers Help? Should They? from The Progress Educational Trust podcast, opens in a new tab

    Mar 9, 20261 hr 30 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses what employers can and should do, for employees who are receiving fertility treatment or who are dealing with infertility . The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Becky Kearns (Chief Executive of Fertility Matters at Work) ⚫ Seema Duggal (Coordinator of the Fertility in the Workplace initiative at Fertility Network UK) ⚫ Dr Krystal Wilkinson (Associate Professor of Human Resource Management at Manchester Metropolitan University) ⚫ Dr Michael Carroll (Reader in Reproductive Science at Manchester Metropolitan University) ⚫ Sandy Christiansen (EMEA Consultant at Carrot Fertility) ⚫ Natalie Sutherland (Trustee at PET, and Partner at the International Family Law Group) PET is grateful to Carrot Fertility for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  11. Donor Conception and Genomics: Sperm, Eggs, Embryos, Mitochondria from The Progress Educational Trust podcast, opens in a new tab

    Mar 2, 202652 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses the genetics and genomics of various forms of donor conception , and related scientific and ethical issues. The discussion – which originally took place at the PET Annual Conference – is introduced by Sarah Norcross (Director of PET ) and chaired by Professor Karen Sermon (former Chair of the European Society of Human Reproduction and Embryology), with contributions from: ⚫ Professor Stéphane Viville (founder of the Genetics of Infertility Unit at the University Hospitals of Strasbourg) ⚫ Professor Dagan Wells (Professor of Reproductive Genetics at the University of Oxford and Director of Juno Genetics) ⚫ Professor Michael Parker (Director of the Ethox Centre and of the Global Health Bioethics Network) ⚫ Debbie Kennett (Genetic Genealogist) PET is grateful to the European Society of Human Reproduction and Embryology for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  12. Polygenic Risk, Polygenic Scores, Polygenic Indices: What Are They? What Should Be Done with Them? from The Progress Educational Trust podcast, opens in a new tab

    Feb 23, 202634 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses the science and ethics of PGT-P – a controversial form of preimplantation genetic testing that uses polygenic scores , rather than using more traditional forms of genomic data. The discussion – which originally took place at the PET Annual Conference – is chaired by Dr Philip Ball (science writer and broadcaster), with contributions from: ⚫ Dr Emma Meaburn (Behavioural Geneticist at Birkbeck University of London) ⚫ Dr Dorit Barlevy (Senior Researcher at Baylor College of Medicine) ⚫ Professor Angus Clarke (Emeritus Professor of Clinical Genetics at Cardiff University) PET is grateful to the British Fertility Society for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  13. The Origins of Preimplantation Genetic Testing from The Progress Educational Trust podcast, opens in a new tab

    Feb 16, 202614 min

    This episode of the Progress Educational Trust ( PET ) podcast features Professor Alan Handyside – a pioneer of preimplantation genetic testing – explaining how and why it became scientifically possible, and also legally permissible, to test the DNA of IVF embryos . This discussion – which originally took place at the PET Annual Conference – is introduced by Sarah Norcross (Director of PET ) and chaired by Dr Philip Ball (science writer and broadcaster). PET is grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  14. PGT-A as an IVF Add-On: 25 Years of Controversy from The Progress Educational Trust podcast, opens in a new tab

    Feb 5, 202652 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses longstanding controversies surrounding PGT-A (preimplantation genetic testing for aneuploidy) – an 'add-on' to IVF treatment whose use has been the subject of lively debate for the past 25 years. The discussion – which originally took place at the PET Annual Conference – is introduced by Sarah Norcross (Director of PET ) and chaired by Dr Deborah Cohen (science writer and broadcaster), with contributions from: ⚫ Professor Karen Sermon (former Chair of the European Society of Human Reproduction and Embryology) ⚫ Dr Justin Chu (Medical Director of TFP Oxford Fertility) ⚫ James Lawford Davies (Partner at LDMH Partners) ⚫ Professor Manuela Perrotta (Leader of the Remaking Fertility initiative) PET is grateful to Remaking Fertility – an initiative based at Queen Mary University of London – for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  15. Expanded Carrier Screening: How Is It Used? What Are the Ethical Implications? from The Progress Educational Trust podcast, opens in a new tab

    Jan 12, 202651 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses the use of expanded carrier screening to test prospective parents, and/or donors of sperm or eggs, for gene variants that could potentially lead to ill health in future children. The discussion – which originally took place at the PET Annual Conference – is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Sara Levene (Consultant Genetic Counsellor and founder of Guided Genetics) ⚫ Professor Jackson Kirkman-Brown (Science Lead at the Birmingham Women's Fertility Centre) ⚫ Dr Heidi Mertes (Chair of Belgium's Federal Commission for Medical and Scientific Research on Embryos In Vitro ) ⚫ Professor Cathy Herbrand (Principal Investigator at PRECAS) PET is grateful to Reproduction in the Age of Genomic Medicine: The Emergence, Commercialisation and Implications of PReconception Expanded CArrier Screening ( PRECAS ) – a project based at De Montfort University – for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  16. Rare Metabolic Diseases: Advancing Understanding, Improving Outcomes from The Progress Educational Trust podcast, opens in a new tab

    Dec 15, 20251 hr 31 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses how to improve diagnosis, treatment and support for people affected by rare and inherited metabolic diseases . The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Jonathan Gibson (Lead for Campaigns and Communications at the charity Metabolic Support UK) ⚫ Dr Srividya Sreekantam (Consultant in Paediatric Metabolic Medicine at Birmingham Women's and Children's Hospital NHS Trust) ⚫ Professor Evangeline Wassmer (Consultant in Paediatric Neurology at Birmingham Women's and Children's Hospital NHS Trust) ⚫ Professor Frances Platt (Professor of Biochemistry and Pharmacology at the University of Oxford) ⚫ Dr Julien Baruteau (Consultant in Paediatric Metabolic Medicine at Great Ormond Street Hospital for Children) All of us who live, breathe, eat and think are able to do so thanks to our metabolism – the set of chemical reactions via which substances are transformed inside our bodies, in order to sustain the functioning of our cells, tissues, organs and systems. Our metabolism enables us to obtain usable energy from the food that we consume, and then get rid of toxins that are left over. All of this is in turn dependent on our DNA , which tells our body how to manufacture certain molecules that make metabolism possible. A vast range of diseases can disrupt human metabolism, and thousands of these diseases can be inherited. Such inherited metabolic diseases are rare, in the sense that the precise cause and consequence of each disease occurs in a relatively small number of people. Collectively, however, inherited metabolic diseases are common. Many inherited metabolic diseases affect the central nervous system , but such diseases can potentially affect any of our bodily systems. The impact of such diseases – on children, adults and families – can be devastating. In this podcast, experts and advocates – including the pioneers of relevant medications , and of a gene therapy that involves genome editing – discuss how best to address challenges posed by rare and inherited metabolic diseases. Aspects discussed include diagnosis , treatment , support and broader public understanding . PET is grateful to Amicus Therapeutics for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  17. Rare Disease Genomic Testing: How Do We Make Access Equitable and Timely? from The Progress Educational Trust podcast, opens in a new tab

    Nov 24, 20251 hr 34 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses how we might improve access to genetic and genomic testing , and related services, for people and families affected by rare disease . The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Dr Sarah Wynn (Chief Executive of Unique) ⚫ Miranda Durkie (Head of Rare Disease at the North East and Yorkshire Genomic Laboratory Hub) ⚫ Professor Emma Baple (Professor of Genomic Medicine at the University of Exeter) ⚫ Dr Ellen Thomas (Chief Medical Officer at Genomics England) ⚫ Adam Clatworthy (Co-Founder of CRELD1 Warriors) A disease that affects fewer than one in 2,000 people is generally considered 'rare'. However, such rare diseases are so common in the aggregate that they affect around one in 17 people at some point during their lives. Four-fifths of rare diseases are known to have a basis in people's genomes , either in inherited DNA or in de novo variants (differences in DNA that owe nothing to the previous generation). For this reason, genetic and genomic testing – ideally, whole genome sequence analysis – can be crucial in establishing diagnoses, and guiding treatment, for those who are thought to have a rare disease . In the UK, these facts have been emphasised in official documents and Government statements going back more than a decade. The Rare Diseases Strategy of 2013 committed 'all four countries of the UK' to 'making high quality diagnostic tests accessible' . The Rare Diseases Framework of 2021 identified 'helping patients get a final diagnosis faster' as the first of the UK's 'priorities for the next five years' . Those five years have almost elapsed, so where do we stand now? Several services and resources seek to make rare disease genomic testing more accessible and useful. These include NHS England's Genomic Medicine Service and National Genomic Test Directory , the Scottish Genomic Test Directories , and guidance such as the Association for Clinical Genomic Science's Best Practice Guidelines for Variant Classification in Rare Disease and the British Society for Genetic Medicine's guidance Managing Incidental Findings . However, challenges remain. Turnaround times for various parts of the genomic testing process – patient access to the relevant test, receipt of test results from an appropriate clinician and in an appropriate fashion, and follow-up and referral (where these are necessary) – are not always consistent, and can be overly long. This can then extend the 'diagnostic odyssey' that is too often experienced by rare disease patients and their families. A Working Group spanning various professions and organisations has published a Position Statement detailing these and other challenges, and making recommendations to address them. In this podcast, experts and advocates including authors of the Position Statement explore rare disease genomic testing, and discuss how to make it equitable and timely. PET is grateful to the NIHR Exeter Biomedical Research Centre for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  18. Mitochondrial Donation: Does It Work? What Next? from The Progress Educational Trust podcast, opens in a new tab

    Nov 3, 20251 hr 24 min

    This episode of the Progress Educational Trust ( PET ) podcast discusses the use of mitochondrial donation to avoid mitochondrial disease , with speakers including two of the pioneers whose work has resulted in the birth of eight UK babies with donated mitochondria . The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Professor Mary Herbert (pioneer of mitochondrial donation, and lead author of the first study reporting embryological and reproductive aspects of the use of mitochondrial donation in treatment in the UK) ⚫ Professor Sir Doug Turnbull (pioneer of mitochondrial donation, and lead author of the first study reporting maternal and child health outcomes following the use of mitochondrial donation treatment in the UK) ⚫ Liz Curtis (established the Lily Foundation after losing her daughter to mitochondrial disease) ⚫ Professor Catherine Mills (Patient and Community Engagement Lead at the mitoHOPE pilot programme for mitochondrial donation in Australia) At least eight children with donated mitochondria have been born in the UK . All of the children are reported to have made normal developmental progress, and none of them show any sign of mitochondrial disease. The announcement of this news came 10 years after a successful campaign – by PET , the Lily Foundation and others – to change UK law , in order to permit the use of mitochondrial donation to avoid transmission of mitochondrial disease from mother to child. A similarly successful campaign in Australia has led to the introduction of Maeve's Law , named in honour of a young Australian girl who has mitochondrial disease. As in the UK, the Australian legislation permits the carefully regulated use of mitochondrial donation in treatment. In this podcast pioneers, experts and advocates at the forefront of mitochondrial donation explain what has been achieved to date, and discuss what should happen next. PET is grateful to the Adelphi Genetics Forum , the British Fertility Society , CooperSurgical and the Senior Infertility Nurse Group for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  19. Robert Edwards at 100: Remembering an IVF Visionary from The Progress Educational Trust podcast, opens in a new tab

    Oct 6, 20251 hr 45 min

    This episode of the Progress Educational Trust ( PET ) podcast marks the 100th birthday of the late IVF pioneer Professor Sir Robert Edwards , known widely (and affectionately) as 'Bob'. The podcast explores Bob's life and legacy, including the dramatisation of his work with Patrick Steptoe and Jean Purdy in the film Joy . The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Dr Jenny Joy (Bob's daughter) ⚫ Professor Barry Bavister (the first person ever to witness IVF in humans , while working alongside Bob in 1968) ⚫ Alastair MacDonald (the second person ever born who was conceived via IVF ) ⚫ Grace MacDonald (Alastair's mother, who gave birth to him in 1979) ⚫ Professor Geraldine Hartshorne (completed her PhD under Bob's supervision in 1988, and is now Scientific Director of the Coventry Centre for Reproductive Medicine) ⚫ Jane Blower (President of the Association of Reproductive and Clinical Scientists) ⚫ Professor Alfonso Martínez Arias (Research Professor at the Catalan Institution for Research and Advanced Studies and at Pompeu Fabra University) ⚫ Professor Nick Hopwood (Professor of History of Science and Medicine at the University of Cambridge) PET is grateful to the Association of Reproductive and Clinical Scientists for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

  20. 40 Years of the Surrogacy Arrangements Act: What Next for Surrogacy? from The Progress Educational Trust podcast, opens in a new tab

    Sep 4, 20251 hr 33 min

    This episode of the Progress Educational Trust ( PET ) podcast marks 40 years since the UK introduced dedicated legislation to govern surrogacy , and explores whether and how this law might be updated. The discussion is chaired by Sarah Norcross (Director of PET ), with contributions from: ⚫ Kim Cotton (founder of Childlessness Overcome Through Surrogacy) ⚫ Sarah Jones (Chief Executive of Surrogacy UK) ⚫ Paul Morgan-Bentley (Head of Investigations at The Times) ⚫ Professor Kirsty Horsey (Professor of Law at Loughborough University) ⚫ Natalie Sutherland (Partner at the International Family Law Group) ⚫ Dr Katherine Wade (Principal Investigator at the Children's Voices in Surrogacy Law project) PET is grateful to the British Fertility Society and CooperSurgical for supporting this discussion. PET is also grateful to Jon Nicoll, who created the opening and closing music for its podcast. Register at https://www.progress.org.uk/events/upcoming-events/ for upcoming PET events.

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