UK Citizens’ Jury on Genome Editing: Expert talks
The expert witnesses provided information and evidence about the issues the Jury covered. Some of them explained the science while others provided their views on the moral and social issues raised by heritable genome editing.
These talks were filmed at the 2022 Citizens’ Jury on Genome Editing
View the schedule of expert talks
Expert Witnesses |
Title of presentation |
| Day 1 | |
| Sasha Henriques, Doctoral student Wellcome Connecting Science and Principal Genetic Counsellor, Guy’s and St Thomas’s NHS Foundation Trust. | The science of heritable diseases |
|
Oliver Bower, PhD student in the Human Embryo and Stem cell Laboratory at the Francis Crick Institute. |
Basic introduction to DNA, genes and germline editing |
| Sarah Norcross, Director of Progress Educational Trust. |
Presented twice on day 1: 1. The legal and policy context 2. Sort out the practicalities first – a pragmatic overview of the regulatory landscape and the role of the Human Fertilisation and Embryology Authority |
| Dr Mark Sheehan, Associate Professor and Oxford Biomedical Research Centre Ethics Fellow and the Ethox Centre in the Nuffield Department of Population Health. |
Presented twice on day 1: 1. Application in a research setting (He Jiankui case) 2. What are we waiting for? Arguments from a bioethics perspective to embrace embryo editing |
| Dr Sarah Bowdin, Medical director of the East Genomic Laboratory Hub. | Potential application in a clinical setting |
| Professor Felicity Boardman, University of Warwick. | The ethical and social context and how serious genetic disease is discussed |
| Dr Sarah Bowdin, Medical director of the East Genomic Laboratory Hub. | A clinical perspective on the realism of genome editing |
| Professor Jackie Leach Scully, Professor of Bioethics and Director of the Disability Innovation Institute, University of New South Wales, Australia. | We should wait (Video presentation), arguments from a bioethics perspective as to why we should not pursue embryo editing |
| Day 2 | |
| Sara Levene, Consultant Genetic Counsellor at the Centre for reproductive and Genetic Health. | A view from the private sector on pre- implantation genetic diagnosis, PGD services (Video presentation) |
| Esther Fox, Head of Accentuate. | Thoughts on what a personal ‘patient’ perspective is to live with a ‘serious genetic condition’ and the perceived threat of genome editing (Video presentation) |
| Professor Trevor Stammers, former Associate Professor of Bioethics and Medical Law and Director of the Centre for Bioethics and Emerging Technologies. | A Christian perspective |
| Mufti Mohammed Zubair Butt, Senior Advisor on Islamic law at the Institute of Islamic Jurisprudence, Bradford and Lecturer in Ethics of Organ Transplantation at the Markfield Institute of Higher Education | An Islamic perspective (Video presentation) |
| Oliver Bower, PhD student in the Human Embryo and Stem cell Laboratory at the Francis Crick Institute. | A research scientist’s perspective on the 14 day rule used in embryo research |
| Dr Mark Bale, former policy advisor and Programme Director for the 100,000 Genomes. | Policy context and perspective |
Sasha Henriques
Sasha Henriques is a Principal Genetic Counsellor from Guy’s and St Thomas’s NHS Foundation Trust. Sasha has specialised in both cardiac genetics and focussing on meeting the needs of all cultural groups through policy, research, and clinical care in genomics.
She has also previously been a genetic counsellor in South Africa. This experience led to the development of a package of cross-cultural teaching for genetic counsellors which is now a component of the Genetic Counselling MSc at Cardiff University and the Scientist Training Programme in England. She is an advocate for sharing knowledge with communities and for inclusivity within genomics.
Oliver Bower
Oliver is a PhD student in the Human Embryo and Stem Cell Laboratory at the Francis Crick Institute in London. His research focuses on using CRISPR/Cas9 gene editing to understand the function of genes crucial for early development. By using CRISPR/Cas9, genes of interest can be disrupted and the effect of their loss on development can be studied.
Before joining the Crick, Oliver worked as a research assistant at the University of Sheffield Centre for Stem Cell Biology. Oliver obtained his BSc in Biomedical Sciences at the University of Sheffield, with a final year dissertation on the suitability of using CRISPR/Cas9 for treating muscular dystrophies.
Sarah Norcross 1
Sarah Norcross is Director of Progress Educational Trust (PET) and Commissioning Editor of its flagship publication BioNews. PET is an independent charity which aims to improve choices for people affected by infertility and/or genetic conditions. Sarah is a trustee at the British Fertility Society (BFS), chair of the BFS Special Interest Group on Law, Policy and Ethics, and an external adviser to the University of Cambridge’s Reproduction Strategic Research Initiative. Sarah serves on the European Society of Human Reproduction and Embryology’s Working Group on Add-Ons, and on the Human Fertilisation and Embryology Authority’s Patient Organisation Stakeholder Group.
Sarah Norcross 2
Sarah Norcross is Director of Progress Educational Trust (PET) and Commissioning Editor of its flagship publication BioNews. PET is an independent charity which aims to improve choices for people affected by infertility and/or genetic conditions. Sarah is a trustee at the British Fertility Society (BFS), chair of the BFS Special Interest Group on Law, Policy and Ethics, and an external adviser to the University of Cambridge’s Reproduction Strategic Research Initiative. Sarah serves on the European Society of Human Reproduction and Embryology’s Working Group on Add-Ons, and on the Human Fertilisation and Embryology Authority’s Patient Organisation Stakeholder Group.
Mark Sheehan
Mark Sheehan is an Associate Professor and Oxford Biomedical Research Centre (BRC) Ethics Fellow at the Ethox Centre in the Nuffield Department of Population Health. He is a National Research Ethics Advisor for the National Research Ethics Service and a member of numerous advisory boards and ethics committees, including the NICE’s Highly Specialised Technology Evaluation Committee.
His research projects include: (i) the nature and role of research ethics governance, (ii) consent and governance in population level research, (iii) trust and trustworthiness, (iv) patient and public involvement in healthcare research and policy, and (v) the ethics of public health policy interventions.
Mark Sheehan 2
Mark Sheehan is an Associate Professor and Oxford Biomedical Research Centre (BRC) Ethics Fellow at the Ethox Centre in the Nuffield Department of Population Health. He is a National Research Ethics Advisor for the National Research Ethics Service and a member of numerous advisory boards and ethics committees, including the NICE’s Highly Specialised Technology Evaluation Committee.
His research projects include: (i) the nature and role of research ethics governance, (ii) consent and governance in population level research, (iii) trust and trustworthiness, (iv) patient and public involvement in healthcare research and policy, and (v) the ethics of public health policy interventions.
Sarah Bowdin
Sarah Bowdin is the Medical Director of the East Genomic Laboratory Hub. She trained in paediatrics and specialised in Clinical Genetics, after witnessing the impact of genetic diagnoses on the care of preterm and sick babies on a neonatal intensive care unit.
Sarah has a special interest in facilitating the widespread clinical adoption of large scale genomic sequencing technologies, both in rare disease and cancer. As Medical Director, she draws on her previous experience of setting up and running a whole genome sequencing clinic for undiagnosed paediatric and cardiac disorders, at the Hospital for Sick Children, Toronto.
Felicity Boardman
Professor Felicity Boardman is a social scientist based at Warwick Medical School specialising in the social and ethical aspects of genomics, particularly as these relate to reproduction. Her work focuses on the perspectives and insights offered by people living with genetic conditions and her current research explores the use of genetic technologies within existing newborn screening programmes. Felicity sits on the Foetal, Maternal and Child Health Reference Group of the UK National Screening Committee, and was also recently involved as an expert witness in the Public Dialogue on Whole Genome Sequencing for Newborn Screening (Genomics England).
Jackie Leach Scully
Jackie Leach Scully is Professor of Bioethics and Director of the Disability Innovation Institute, University of New South Wales, Australia. After some years working in molecular biology, she switched to focus on the ethical issues of biomedical technologies. She has worked in Switzerland, Germany and the UK, and since 2019 has been based in Sydney. Her research examines how biomedical developments affect disabled people, and how to increase public engagement in bioethical debate. Jackie has been deaf since childhood and a disability activist for nearly 40 years. She holds several academic honours including Fellowships of the Academy of Social Sciences and of the Royal Society of New South Wales.
Sarah Bowdin 2
Sarah Bowdin is the Medical Director of the East Genomic Laboratory Hub. She trained in paediatrics and specialised in Clinical Genetics, after witnessing the impact of genetic diagnoses on the care of preterm and sick babies on a neonatal intensive care unit.
Sarah has a special interest in facilitating the widespread clinical adoption of large scale genomic sequencing technologies, both in rare disease and cancer. As Medical Director, she draws on her previous experience of setting up and running a whole genome sequencing clinic for undiagnosed paediatric and cardiac disorders, at the Hospital for Sick Children, Toronto.
Sarah Levene
Sara Levene is a Consultant Genetic Counsellor at the Centre for Reproductive & Genetic Health, leading the Pre-implantation Genetic Diagnosis (PGD) service since 2017. Sara started her career in cancer genetics and general Genetic Counselling at Guy’s and St Thomas’s NHS Foundation Trust in 1998, before becoming part of the PGD team there in 2008. Sara has a strong interest in population screening. She previously ran the Tay Sachs screening service at Guy’s hospital for the Jewish population, and now offers expanded pan-ethnic carrier screening at CRGH. Sara is Chair of the Association of Genetic Nurses & Counsellors and sits on the medical advisory panel of two charities.
Esther Fox
Esther Fox is a programme director, artist and researcher, interested in exploring the synapses between medicine, art, museums and ethics. Esther is Head of Accentuate, creating opportunities for D/deaf, disabled and neurodivergent people to participate and lead in the cultural sector and is currently taking the strategic lead on Curating for Change, working with over 20 museums across England to deliver a programme for disabled people wanting to pursue a career in museums. She is a trustee for Hastings Contemporary and co-chairs the Community Panel at the Sanger Institute. Esther also has the genetic condition Spinal Muscular Atrophy
Trevor Stammers
Trevor Stammers was a GP for 30 years before becoming Associate Professor of Bioethics and Medical Law and Director of the Centre for Bioethics and Emerging Technologies (CBET) at St Mary’s University, Twickenham until 2021.
He is Editor of The New Bioethics and his latest book, co-edited with Calum MacKellar, ‘The Ethics of Engendering Posthumans’ was published in 2022. His book on the ethics of organ donation is due out in 2023.
Trevor’s research interests are the ethics of transplantation and genomic editing. He has also written on conscience in medicine and the limits of autonomy in healthcare.
Mufti Zubair Butt
Mufti Mohammed Zubair Butt, Senior Advisor on Islamic Law at the Institute for Islamic Jurisprudence, Bradford and lecturer in Organ Transplantation at the Markfield Institute of Higher Education.
Oliver Bower
Oliver is a PhD student in the Human Embryo and Stem Cell Laboratory at the Francis Crick Institute in London. His research focuses on using CRISPR/Cas9 gene editing to understand the function of genes crucial for early development. By using CRISPR/Cas9, genes of interest can be disrupted and the effect of their loss on development can be studied.
Before joining the Crick, Oliver worked as a research assistant at the University of Sheffield Centre for Stem Cell Biology. Oliver obtained his BSc in Biomedical Sciences at the University of Sheffield, with a final year dissertation on the suitability of using CRISPR/Cas9 for treating muscular dystrophies.
Mark Bale
Over the past 30 years, Mark Bale has led and shaped Government policy at the intersection between research, healthcare, ethics, and legislation. He has experience with multilateral international bodies, including the EU, OECD, WHO, and UNESCO.
Until March 2022, Mark was policy advisor and Programme Director for the 100,000 Genomes (seconded to Genomics England) together with regenerative medicine and gene therapy, genome editing, precision medicine and rare disease policy. He represented the UK at the Council of Europe Steering Committee on Human Rights and Biomedicine, and was Chair of the predecessor Committee on Bioethics at the Council of Europe from 2014-2016.
