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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...
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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.
show less
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.
The Progress Educational Trust podcast
The Progress Educational Trust podcast
IVF Add-Ons: Building Bridges between Clinics, Regulators and Patients
1 JUL 2024 · This episode of the https://www.spreaker.com/show/progress-educational-trust-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:
âš« Dr Manuela Perrotta (Reader in Technology and Organisation at Queen Mary University of London)
âš« Alex Davies-Jones (Parliamentary Candidate for Pontypridd)
âš« Dr Rachel Gregoire (Deputy Chair of the Association of Reproductive and Clinical Scientists)
âš« Rachel Cutting (Director of Compliance and Information at the Human Fertilisation and Embryology Authority)
âš« 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 https://www.qmul.ac.uk/remaking-fertility/buildingbridgesproject/ project – led by Dr Manuela Perrotta at Queen Mary University of London, in partnership with PET – has been working with clinics, regulators, patients and others, in order to:
âš« Identify core needs, priorities and challenges faced by different groups involved in fertility care.
âš« Develop novel and collaborative approaches to addressing these challenges, as they relate to IVF add-ons.
âš« Propose a set of feasible solutions.
In this discussion, speakers including Dr Perrotta and also Alex Davies-Jones MP – who has proposed a https://publications.parliament.uk/pa/bills/cbill/58-03/0230/220230.pdf 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.
10 Families and Counting: Time for Global Limits on Donor-Created (Half-) Siblings?
3 JUN 2024 · This episode of the https://www.spreaker.com/show/progress-educational-trust-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:
âš« Professor Jackson Kirkman-Brown (Chair of the Association of Reproductive and Clinical Scientists)
âš« Christina Sommerlund (Business Development Manager at Born Donor Bank)
âš« Kevin Moore (donor-conceived person, also himself a donor)
âš« Dr Astrid Indekeu (Founder of the Support and Expertise Centre for Families by Donor Conception)
âš« 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.
40 Years of Egg Donation and Counting: What Have We Learned? What Happens Next?
13 MAY 2024 · This episode of the https://www.spreaker.com/show/progress-educational-trust-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:
âš« Professor Alan Trounson (IVF pioneer responsible for the first successful egg donation)
âš« Professor Catherine Mills (Head of the School of Philosophical, Historical and International Studies at Monash University)
âš« Stephen Page (Director of the law firm Page Provan)
âš« 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 https://doi.org/10.1038/307174a0 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 https://doi.org/10.1016/j.fertnstert.2018.02.126 to the early development of IVF, working concurrently with the UK team responsible for the https://doi.org/10.1016/s0140-6736(78)92957-4.
Within weeks of the January 1984 announcement, it was reported that a second child conceived with a donor egg had been born, following https://doi.org/10.1001/jama.1984.03340310011002. 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.
Mary Warnock at 100: The Architect of Embryo Law
29 APR 2024 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast marks the 100th birthday of the late Baroness Mary Warnock.
The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:
âš« Felix Warnock (son of the late Baroness Mary Warnock)
âš« Dr Duncan Wilson (Senior Lecturer at the University of Manchester)
âš« Professor Anna Mastroianni (Professor of Bioethics and Law at Johns Hopkins University)
âš« Baroness Ruth Deech (former Chair of the Human Fertilisation and Embryology Authority)
âš« 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 http://www.hfea.gov.uk/docs/Warnock_Report_of_the_Committee_of_Inquiry_into_Human_Fertilisation_and_Embryology_1984.pdf 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 https://www.hfea.gov.uk/ – 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.
Welfare of the Fertility Patient: Spotting Signs and Treatment after Trauma
25 MAR 2024 · This episode of the https://www.spreaker.com/show/progress-educational-trust-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:
âš« Professor Abha Maheshwari (Lead Clinician at Fertility Scotland)
âš« Ruth Phillips (Fertility Counsellor at the Edinburgh Fertility Centre)
âš« Dr Susheel Vani (Lead Clinician at the Glasgow Royal Infirmary)
âš« 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.
IVF Add-Ons: How Should We Score the HFEA's New Ratings System?
26 FEB 2024 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses recent changes to the way the UK's fertility regulator – the Human Fertilisation and Embryology Authority (HFEA) – assesses and explains https://www.hfea.gov.uk/treatments/treatment-add-ons/.
The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:
âš« Dr Tim Child (Chair of the HFEA's Scientific and Clinical Advances Advisory Committee)
âš« Professor Joyce Harper (Professor of Reproductive Science at University College London)
âš« Dr Ippokratis Sarris (Director of King's Fertility)
âš« Tracey Sainsbury (Fertility Counsellor)
âš« 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 https://www.legislation.gov.uk/ukpga/1990/37/contents 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 https://www.hfea.gov.uk/about-us/news-and-press-releases/2019/fertility-regulator-calls-for-clinics-to-be-more-open-about-treatment-add-ons/ 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 https://www.hfea.gov.uk/about-us/news-and-press-releases/2023/uk-fertility-regulator-launches-improved-ratings-for-fertility-treatment-add-ons/ its ratings system, replacing its three previous categories for add-ons with https://www.hfea.gov.uk/treatments/treatment-add-ons/#what-do-the-ratings-mean. 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 https://portal.hfea.gov.uk/knowledge-base/other-guidance/apply-to-propose-a-treatment-for-inclusion-in-the-hfea-s-traffic-light-rated-list-of-add-ons/.
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.
Fertility Treatment for Single People: Who Should Pay?
25 JAN 2024 · This episode of the https://www.spreaker.com/show/progress-educational-trust-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:
âš« Dr Sarah Martins da Silva (Clinical Lead for Fertility Services at NHS Tayside)
âš« Dr Alan Brown (Senior Lecturer in Private Law at the University of Glasgow)
âš« Dr Catherine Jones (Lecturer at King's College London)
âš« 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.
Innovation from the Pandemic: From Video Appointments to Electronic Consent
30 OCT 2023 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses technologies and approaches that helped fertility patients and practitioners during the COVID-19 pandemic, and that are still proving useful now.
The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:
âš« Dr Ashleigh Holt-Kentwell (Clinical Research Fellow at Aberdeen Fertility Centre)
âš« Ciara Heatherwick (Specialist Nurse at Glasgow Royal Infirmary)
âš« Lesley Benzie (Fertility Counsellor at Glasgow Royal Infirmary)
âš« Alison Elliot (Fertility Counsellor at Glasgow Royal Infirmary)
âš« George Hughes (Lead Clinical Embryologist at Ninewells Hospital's Assisted Conception Unit)
âš« Dave Wales (Quality Manager at the Edinburgh Fertility Centre)
Fertility treatment was – like many other areas of healthcare – drastically disrupted by the COVID-19 pandemic, causing difficulties for patients and professionals alike.
However, the pandemic also prompted creative solutions and novel approaches, some of which are still proving useful now.
In this discussion, a cross-section of fertility professionals – a Clinical Research Fellow, a Specialist Nurse, two Fertility Counsellors, a Clinical Embryologist and a Quality Manager – discuss what has been learned from the pandemic, and the scope for further innovation.
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.
Opening the Register: How to Handle Disclosure of Gamete Donor Information
9 OCT 2023 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses an imminent change that will have consequences for people involved in – and affected by – donor conception.
The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:
âš« Rachel Cutting (Director of Compliance and Information at the Human Fertilisation and Embryology Authority)
âš« Laura Bridgens (donor-conceived person, and Director of Donor Conceived UK)
âš« Rebekah Dundas (mother of three donor-conceived children)
âš« Nina Barnsley (Director of the Donor Conception Network)
In October 2023, some people who were conceived from donor gametes in the UK – where the relevant sperm or eggs were donated after the https://www.legislation.gov.uk/uksi/2004/1511/contents/made came into force – will reach the age of 18.
From this point forward, a growing number of donor-conceived people will be officially entitled to https://www.hfea.gov.uk/donation/donor-conceived-people-and-their-parents/finding-out-about-your-donor-and-genetic-siblings/ – the Human Fertilisation and Embryology Authority (HFEA) – for their donor's full name, date of birth, and last known address.
The HFEA has https://www.hfea.gov.uk/about-us/news-and-press-releases/2023-news-and-press-releases/fresh-plea-from-uk-fertility-regulator-as-monumental-changes-to-donor-anonymity-law-finally-come-to-fruition/ to raise awareness of the changing situation, and to encourage relevant donors to ensure that they are contactable. This entails the donor providing up-to-date contact details to the clinic where they donated 18 or more years ago (if that clinic still exists), and/or providing these details to the HFEA.
In this discussion a donor-conceived person, a parent of donor-conceived children, and representatives of the HFEA and the Donor Conception Network discuss practical, personal and ethical aspects of disclosing donor information.
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.
Small Change: Is It Time to Reconsider Compensation for Gamete Donors?
2 OCT 2023 · This episode of the https://www.spreaker.com/show/progress-educational-trust-podcast discusses levels of compensation for donors of sperm or eggs.
The discussion is chaired by Sarah Norcross (Director of PET), with contributions from:
âš« Nayla Tohme (Patient Engagement Officer at the London Egg Bank)
âš« Hayley King (donor-conceived person, also herself a mother of twins conceived with donor sperm)
âš« Saghar Kasiri (Director of European Operations at Cryos International)
âš« Dr Ben Hurlbut (Associate Professor of Bioscience Ethics at Arizona State University)
What levels of compensation – financial or otherwise – should be standard, and permissible, for gamete donors? The UK's fertility regulator, the Human Fertilisation and Embryology Authority (HFEA), last addressed this question in 2011.
Following a public consultation, the HFEA decided that donors could receive fixed sums of money (this had not been permitted previously), with a maximum of £35 per clinic visit for sperm donors and a maximum of £750 per cycle of donation for egg donors. The HFEA arrived at these figures after reviewing policies in 15 other European countries, taking particular inspiration from Danish policy (for sperm donor compensation) and Spanish policy (for egg donor compensation).
The maximum payments set in 2011 remain in place in the https://portal.hfea.gov.uk/media/it1n3vpo/2022-07-01-code-of-practice-2021.pdf of the HFEA's Code of Practice (CoP). The CoP also permits https://www.hfea.gov.uk/donation/donors/egg-sharing/ and sperm sharing arrangements, stating that clinics 'may offer benefits in kind, in the form of reduced-price or free licensed services (for example, fertility treatment or storage) or quicker access to those services, in return for providing eggs or sperm for the treatment of others'.
12 years on, should compensation for gamete donors be reconsidered, to take account of inflation and the cost-of-living crisis?
Importantly, those who donate gametes in the UK are only officially permitted to receive 'compensation' for their donation, as distinct from 'payment'. This distinction was originally a requirement of the https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex:32004L0023 of 2004, which stipulates that 'member states shall endeavour to ensure voluntary and unpaid donations of tissues and cells' and that 'donors may receive compensation, which is strictly limited to making good the expenses and inconveniences related to the donation'.
Now that the UK has left the European Union, it might be asked whether the UK is still bound by this particular requirement – and if it is, whether it should be.
PET is grateful to the Association of Reproductive and Clinical Scientists and 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.
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...
show more
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.
show less
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.
Information
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