This episode of the Progress Educational Trust (PET) podcast features leading figures in health-related policy, research and ethics discussing the long-term impact of the UK's Our Future Health programme, and what can be learned from the experience of the USA's All of Us programme.

Topics explored include whether, when, why and how participants in these programmes might be re-contacted, following their initial participation.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Sir John Bell (Chair of Trustees at Our Future Health)

⚫ Dr Cosima Gretton (Executive Director of Digital Health, and Deputy Chief Medical Officer, at Our Future Health)

⚫ Nicola Perrin (Chief Executive of the Association of Medical Research Charities)

⚫ Professor Michael Parker (Director of the Ethox Centre and of the Global Health Bioethics Network)

⚫ Dr Geoffrey Ginsburg (Chief Medical and Scientific Officer at the All of Us programme, at the USA's National Institutes of Health)

PET is grateful to Our Future Health 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.

This episode of the Progress Educational Trust (PET) podcast explores what needs to be done – and why – to ensure that people of diverse ancestries and social backgrounds are represented in genomic data, and in health-related data more generally.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Anika Ladva (Head of Community Engagement at Our Future Health)

⚫ Sasha Henriques (Researcher at Wellcome Connecting Science and at the Wellcome Sanger Institute)

⚫ Professor Segun Fatumo (Professor and Chair of Genomic Diversity at Queen Mary University of London)

⚫ Dr Divya Shanmugam (Researcher at Cornell Tech)

PET is grateful to Our Future Health 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.

This episode of the Progress Educational Trust (PET) podcast discusses implications – for patients, practitioners and policymakers – of health conditions, and aspects of lifestyle, that can affect fertility treatment outcomes.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Dr Antony Nicoll (Senior Medical Officer for Maternal and Women's Health for the Scottish Government)

⚫ Professor Rebecca Reynolds (Professor of Metabolic Medicine at the University of Edinburgh)

⚫ Professor Colin Duncan (Professor of Reproductive Medicine and Science at the University of Edinburgh)

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.

This episode of the Progress Educational Trust (PET) podcast discusses pregnancy loss in relation to fertility treatment, including how to identify and reduce risks and how to provide appropriate support.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Dr Andrea Woolner (Early Pregnancy Lead for NHS Grampian)

⚫ Dr Cheryl Dunlop (Consultant in Gynaecology and Reproductive Medicine at the Royal Infirmary of Edinburgh)

⚫ Dr Matthew Prior (Head of Department at the Newcastle Fertility Centre)

⚫ Katy Schnitzler (Information, Research and Training Lead at the Miscarriage Association)

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.

This episode of the Progress Educational Trust (PET) podcast explains and explores the different approaches of the UK's largest genomics projects, and the impact of these projects on healthcare, research and society.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Dame Sue Hill (Chief Scientific Officer for England)

⚫ Dr Adam Lewandowski (Deputy Chief Scientist at UK Biobank)

⚫ Chris Schonewald (Chief of Staff, and Director of Strategy, at Genomics England)

⚫ Dr Raghib Ali (Chief Executive, and Chief Medical Officer, at Our Future Health)

PET is grateful to Our Future Health 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.

This episode of the Progress Educational Trust (PET) podcast is the second instalment in a two-part discussion exploring whether assisted conception can address challenges posed by falling birthrates, and by decreasing population sizes.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Ann Berrington (Director of the Fertility and Family research group at the Centre for Population Change)

⚫ Professor David Bell (Principal Investigator for the Healthy Ageing in Scotland study)

⚫ Professor Søren Ziebe (Senior Scientist at Rigshospitalet's Laboratory of Reproductive Biology)

⚫ Satu Rautakallio-Hokkanen (General Director of Fertility Europe)

⚫ Professor Roger Gosden (biographer of the IVF pioneer Robert Edwards)

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.

This episode of the Progress Educational Trust (PET) podcast is the first instalment in a two-part discussion exploring whether assisted conception can address challenges posed by falling birthrates, and by decreasing population sizes.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Geeta Nargund (Lead Consultant for Reproductive Medicine at St George's University Hospitals)

⚫ Professor Bart Fauser (Scientific Director of the International Federation of Fertility Societies)

⚫ Dr Chris Skedgel (Director of the Office of Health Economics)

⚫ Dr Paul Morland (demographer, author and broadcaster)

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.

This episode of the Progress Educational Trust (PET) podcast discusses lessons for the fertility sector from the UK's infected blood scandal, and from the subsequent Infected Blood Inquiry.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Abha Maheshwari (Lead Clinician at Fertility Scotland)

⚫ Professor Marc Turner (Director of the Scottish National Blood Transfusion Service)

⚫ Professor Emma Cave (Member of the Medical Ethics Expert Group at the Infected Blood Inquiry)

⚫ Professor Bobbie Farsides (Member of the Medical Ethics Expert Group at the Infected Blood Inquiry)

The UK's infected blood scandal is widely regarded as one of the country's worst ever treatment disasters. Between the 1970s and the 1990s, tens of thousands of people in the UK were infected – predominantly with HIV and Hepatitis C, in some instances with other infections including Hepatitis B and Hepatitis D – as a result of being given blood, or blood products or other tissue, that was contaminated.

Most of the infections were contracted either from blood transfusions (in circumstances including childbirth, surgery and treatment for injury) or from treatments for bleeding disorders (such as haemophilia). More than 3,000 deaths have been attributed to these infections, and it has been reported that as many as 140,000 relatives of people infected could seek compensation under new laws.

In this podcast, experts in assisted conception and in blood and tissue donation – plus members of the Medical Ethics Expert Group appointed to advise the Infected Blood Inquiry – explore what the fertility sector might learn from the infected blood scandal, from the Infected Blood Inquiry's final report and from the accompanying report focusing on medical ethics.

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.

This episode of the Progress Educational Trust (PET) podcast discusses how to improve access to – and quality of – fertility treatment for LGBTQ+ people, families and communities.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Dr Carole Gilling-Smith (founder, Medical Director and Chief Executive of the Agora Clinic)

⚫ Professor Nick Macklon (Medical Director of the London Women's Clinic)

⚫ Nancy Kelley (Executive Director of DIVA magazine)

⚫ Laura-Rose Thorogood (founder of LGBT Mummies)

⚫ Dr Marcin Śmietana (Research Fellow at Ca' Foscari University of Venice)

⚫ Jacob Stokoe (founder of Transparent Change)

⚫ Natalie Gamble (Director of NGA Law)

PET is grateful to Merck and Born Donor 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.

This episode of the Progress Educational Trust (PET) podcast discusses access to and funding for preimplantation genetic testing (PGT), specifically in relation to monogenic conditions (PGT-M) and chromosomal structural rearrangements (PGT-SR).

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Charlotte Tomlinson (Clinical Genetics PGT Lead at Guy's Hospital)

⚫ Dr Melanie Nana (Clinical Research Fellow at King's College London)

⚫ Professor Frances Flinter (Trustee at PET and Member of the Human Fertilisation and Embryology Authority)

⚫ Nick Meade (Director of Policy at Genetic Alliance UK)

⚫ Diana Perry (founder and Chief Executive of the Ectodermal Dysplasia Society)

PGT-M and PGT-SR both involve testing and selecting IVF embryos, in order to avoid – or reduce the risk of – genetic conditions that could jeopardise a pregnancy or affect the health of a future child.

This podcast explains and explores:

⚫ What PGT can – and should – be used for.

⚫ Why it can be difficult for some patients to access PGT.

⚫ What might be done to remove barriers to access.

PET is grateful to the D'Oyly Carte Charitable Trust 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.

This episode of the Progress Educational Trust (PET) podcast marks 10 years since the first live birth following a uterus transplant.

Contributors to the podcast include the leader of the medical team responsible for that achievement, and also the pioneers who were responsible for the first uterus transplant in the UK.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Mats Brännström (Professor of Obstetrics and Gynaecology at the University of Gothenburg)

⚫ Professor J Richard Smith (Professor of Practice at Imperial College London)

⚫ Isabel Quiroga (Consultant Transplant and Endocrine Surgeon at the Oxford Transplant Centre)

⚫ Eleanor Findlater (patient and Adviser to Womb Transplant UK)

⚫ Dr Natasha Hammond-Browning (Senior Lecturer in Law at Cardiff University)

PET is grateful to Create Health Foundation and 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.

This episode of the Progress Educational Trust (PET) podcast discusses the Generation Study – an NHS-embedded research study which is sequencing the whole genomes of 100,000 newborn babies, in order to understand whether we can improve our ability to diagnose and treat genetic conditions.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Amanda Pichini (Clinical Director at Genomics England)

⚫ Phern Adams (Project Manager for the Generation Study at Birmingham Women's Hospital)

⚫ Dr Chinthika Piyasena (Principal Investigator for the Newborn Genomes Programme for Evelina London)

⚫ Dr Robin Lachmann (Consultant in Inherited Metabolic Disease at the National Hospital for Neurology and Neurosurgery)

The Generation Study involves babies born in various hospitals in England. Results of the study will help inform future decisions about using whole genome sequencing to support newborn screening.

In this discussion, experts and practitioners explain how the Generation Study is being implemented, and the benefits and risks that may be involved.

PET is grateful to Genomics England and its Newborn Genomes Programme 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.

This episode of the Progress Educational Trust (PET) podcast discusses the use of artworks to improve understanding and advance knowledge of the causes of infertility, and of future prospects for IVF and other assisted reproductive technologies (ART).

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Adèle Marston (Director of the Wellcome Centre for Cell Biology)

⚫ Dr Sarah-Jane Judge (Public Engagement Manager at the Wellcome Centre for Cell Biology)

⚫ David Mola (glass artist)

⚫ Lucy Munro (Research Assistant at the Wellcome Centre for Cell Biology)

⚫ Dr Gerard Pieper (Sir Henry Wellcome Postdoctoral Fellow at the Wellcome Centre for Cell Biology)

⚫ Dr Muriel Erent (Laboratory Manager at Warwick Medical School)

⚫ Aleksandra Byrska (PhD researcher at Warwick Medical School)

⚫ Dr Cerys Currie (Postdoctoral Researcher at Warwick Medical School)

⚫ Professor Geraldine Hartshorne (Scientific Director of the Coventry Centre for Reproductive Medicine)

⚫ Robyn Kerr (poet and hotel manager)

How might creation of and engagement with artworks help patients, scientists and artists to communicate with one another, and develop new insights into fertility? The project New Horizons in Fertility Research has been exploring this question in relation to egg cells and early human embryos.

Bespoke artworks created as part of the project are being used to help patients in Edinburgh and Coventry understand, and visualise, aspects of (in)fertility and related research.

Meanwhile, scientists and researchers are seeking to improve their understanding of patient views and experiences – and to find new perspectives on research questions – by developing and discussing artworks as part of this project.

In this discussion, various people involved in the project – including junior and senior researchers, a glass artist, and a laboratory manager – discuss their work and what they have learned, and consider future possibilities.

PET is grateful to New Horizons in Fertility Research (a project based at the University of Edinburgh's Wellcome Centre for Cell Biology and at the University of Warwick, supported by a ScotPEN Wellcome Engagement Award) 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.

This episode of the Progress Educational Trust (PET) podcast discusses how to address challenges raised by 'add-ons' to IVF treatment, while taking account of the perspectives of clinics, regulators and – most crucially of all – patients.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Manuela Perrotta (Professor of Sociology of Technology and Organisation at Queen Mary University of London)

⚫ Alex Davies-Jones (Parliamentary Candidate for Pontypridd)

⚫ Dr Rachel Gregoire (Deputy Chair of the Association of Reproductive and Clinical Scientists)

⚫ Rachel Cutting (Director of Compliance and Information at the Human Fertilisation and Embryology Authority)

⚫ Kate Brian (Cofounder of the Fertility Alliance)

Add-ons are optional treatments, technologies or procedures offered alongside IVF – often at considerable expense to patients – which may not be supported by reliable evidence.

Despite several regulatory initiatives, concerns persist about the extent to which add-ons are offered and used, and about the quality of information concerning add-ons that is provided to fertility patients.

In recent months, the Building Bridges project – led by Professor Manuela Perrotta at Queen Mary University of London, in partnership with PET – has been working with clinics, regulators, patients and others, in order to:

⚫ Identify core needs, priorities and challenges faced by different groups involved in fertility care.

⚫ Develop novel and collaborative approaches to addressing these challenges, as they relate to IVF add-ons.

⚫ Propose a set of feasible solutions.

In this discussion, speakers including Professor Perrotta and also Alex Davies-Jones MP – who has proposed a Fertility Treatment (Transparency) Bill in Parliament – present the work of the Building Bridges project, and explore related issues.

PET is grateful to the Building Bridges project (part of the Remaking Fertility initiative, based at Queen Mary University of London and funded by the British Academy) 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.

This episode of the Progress Educational Trust (PET) podcast discusses whether there should be limits on the number of people – worldwide – who can be created from the sperm or eggs of the same donor.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Jackson Kirkman-Brown (Chair of the Association of Reproductive and Clinical Scientists)

⚫ Christina Sommerlund (Business Development Manager at Born Donor Bank)

⚫ Kevin Moore (donor-conceived person, also himself a donor)

⚫ Dr Astrid Indekeu (Founder of the Support and Expertise Centre for Families by Donor Conception)

⚫ Dr Grace Halden (Co-Director of the Centre for Medical and Health Humanities at Birkbeck University of London)

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.

This episode of the Progress Educational Trust (PET) podcast marks 40 years since the announcement – in Australia – that a child had been born following egg donation for the first time.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Alan Trounson (IVF pioneer responsible for the first successful egg donation)

⚫ Professor Catherine Mills (Head of the School of Philosophical, Historical and International Studies at Monash University)

⚫ Stephen Page (Director of the law firm Page Provan)

⚫ Professor Nicky Hudson (Director of the Centre for Reproduction Research at De Montfort University)

November 1983 saw the birth, in Australia, of the world's first ever child conceived with a donor egg. For the first time in human history, it became meaningful to distinguish between a child's 'genetic' and 'gestational' mother.

Both the egg donor and the egg recipient were anonymous fertility patients, treated by a team based at Monash University. Announcement of the birth was delayed until January 1984, at the egg recipient's request and also to allow time to confirm the donor's genetic contribution via testing.

The team responsible at Monash was headed by the late Professor Carl Wood (1929-2011), together with Professor Alan Trounson. They initially described the landmark as 'embryo donation', but because the donor egg was fertilised by sperm from the recipient's husband, what they achieved actually constitutes egg donation in today's terminology.

Prior to this, Professors Wood and Trounson and their colleagues had already made several pioneering contributions to the early development of IVF, working concurrently with the UK team responsible for the birth of the world's first IVF baby.

Within weeks of the January 1984 announcement, it was reported that a second child conceived with a donor egg had been born, following work by a separate team in the USA. Other examples of successful egg donation then followed.

In this discussion, Professor Alan Trounson and other experts explore the science, medicine, law and ethics of egg donation, from its beginnings more than 40 years ago to the present day and beyond.

PET is grateful to Gedeon Richter UK Ltd for supporting this discussion. Gedeon Richter had no input into the content or speaker selection.

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.

This episode of the Progress Educational Trust (PET) podcast marks the 100th birthday of the late Baroness Mary Warnock.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Felix Warnock (son of the late Baroness Mary Warnock)

⚫ Dr Duncan Wilson (Senior Lecturer at the University of Manchester)

⚫ Professor Anna Mastroianni (Professor of Bioethics and Law at Johns Hopkins University)

⚫ Baroness Ruth Deech (former Chair of the Human Fertilisation and Embryology Authority)

⚫ Julia Chain (current Chair of the Human Fertilisation and Embryology Authority)

Baroness Mary Warnock (1924-2019) – philosopher and Patron of PET – led a Government committee whose 1984 report went on to shape fertility and embryo research law, both in the UK and around the world.

In this discussion, speakers including the current and former Chairs of the UK's fertility regulator – the Human Fertilisation and Embryology Authority – explore Baroness Warnock's life, work and legacy.

PET is grateful to CooperSurgical and the Adelphi Genetics Forum 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.

This episode of the Progress Educational Trust (PET) podcast discusses how best to understand and address welfare issues in the context of fertility treatment.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Professor Abha Maheshwari (Lead Clinician at Fertility Scotland)

⚫ Ruth Phillips (Fertility Counsellor at the Edinburgh Fertility Centre)

⚫ Dr Susheel Vani (Lead Clinician at the Glasgow Royal Infirmary)

⚫ Nicole McKeith (Fertility Nurse and Nurse Sedationist at Ninewells Hospital)

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.

This episode of the Progress Educational Trust (PET) podcast discusses recent changes to the way the UK's fertility regulator – the Human Fertilisation and Embryology Authority (HFEA) – assesses and explains 'add-ons' to IVF treatment.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Dr Tim Child (Chair of the HFEA's Scientific and Clinical Advances Advisory Committee)

⚫ Professor Joyce Harper (Professor of Reproductive Science at University College London)

⚫ Dr Ippokratis Sarris (Director of King's Fertility)

⚫ Tracey Sainsbury (Fertility Counsellor)

⚫ Dr Tasha Alden (patient and researcher)

Add-ons are optional treatments, technologies or procedures offered alongside IVF – often at considerable expense to patients – which may not be supported by reliable evidence.

The HFEA regulates all UK fertility clinics, including those that offer add-ons, but tends to regulate the add-ons themselves only indirectly. This is because the HFEA's legal powers concern what can be done to or with gametes or embryos outside the human body, and many add-ons fall outside this scope.

The HFEA's other main role in relation to add-ons is providing information for patients and the wider public, explaining what particular add-ons entail and whether there is evidence to support their use. In 2019, the HFEA introduced a 'traffic light' ratings system, placing add-ons in one of three categories depending on the quality of evidence.

In recent months, the HFEA has overhauled its ratings system, replacing its three previous categories for add-ons with five new categories. These new categories involve criteria including the quality of evidence, the impact on treatment outcome, and concerns about safety. Anyone who thinks the regulator's list of add-ons is incomplete can propose an add-on for assessment and inclusion.

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.

This episode of the Progress Educational Trust (PET) podcast discusses whether – and in what circumstances – single people should be able to access publicly funded fertility treatment.

The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:

⚫ Dr Sarah Martins da Silva (Clinical Lead for Fertility Services at NHS Tayside)

⚫ Dr Alan Brown (Senior Lecturer in Private Law at the University of Glasgow)

⚫ Dr Catherine Jones (Lecturer at King's College London)

⚫ Professor Guido Pennings (Director, Bioethics Institute Ghent)

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.