This week at the Progress Educational Trust (29 November 2018)

The Progress Educational Trust (PET) has long been at the forefront of public discussion of genome editing. PET ran the UK's first public conference on this subject, developed (jointly with a fellow charity) recommendations for how best to discuss genome editing in public, and has published articles on genome editing in both the national press and academic journals.

The subject has dominated headlines around the world this week, during the Second International Summit on Human Genome Editing, because a Chinese scientist claims to have created the world's first genome-edited babies in an attempt to confer resistance to HIV.

Although PET supports and has defended the responsible use of genome editing in humans in certain well-regulated contexts, the charity was dismayed by the circumstances surrounding this particular use of the technology. PET Director Sarah Norcross said the following.

'This news is shocking on many levels. First, we would have expected to see a lot more research into the safety and efficacy of genome editing in human embryos, before attempting to achieve a pregnancy. Second, we would have expected the first such application of genome editing to be on an embryo which had a serious genetic condition with life-limiting consequences. Given our current level of knowledge, editing the genomes of healthy embryos to attempt to confer resistance to HIV is completely unethical.'

PET has published both news reports and comment pieces about this week's developments in its flagship publication BioNews, and will continue to follow the story closely. Subscribe to BioNews for free here to be kept updated.

The science and regulation of genome editing will also be discussed in depth this coming Wednesday (5 December) at PET's Annual Conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London.

The conference marks the fact that it has been 10 years since the last major overhaul of UK fertility and embryo law. Speakers will consider situations where researchers, clinicians and patients find themselves pushing at the boundaries of what is permitted or what is clearly defined. Speakers will also consider the significance of wider social changes, in the UK and elsewhere, over the past decade.

There are still a few places available at the conference, but these are going fast. Tickets can be booked here. If you have any queries, please email sstarr@progress.org.uk

Conference presentations include:
New Science, New Families, Old Law: Is the Human Fertilisation and Embryology Act Fit for Purpose?
Keynote Address by Sir James Munby
Former President of the Family Division of the High Court of Justice
Chair of the Nuffield Foundation's Family Justice Observatory
The Human Fertilisation and Embryology Act: Is It Broke and Should We Fix It?
Keynote Address by Sally Cheshire
Chair of the Human Fertilisation and Embryology Authority
Chair of Health Education England (North), and Deputy Chair of the Children and Family Court Advisory and Support Service
The Unknowns of Early Human Development and the Impact on Genome Editing
Presentation by Dr Kathy Niakan
Group Leader of the Francis Crick Institute's Human Embryo and Stem Cell Laboratory
First researcher licensed by the Human Fertilisation and Embryology Authority to edit the genomes of human embryos
Ripping Up the Rulebook
Presentation by Professor John Harris
Emeritus Professor of Bioethics at the University of Manchester
Author of books including Enhancing Evolution: The Ethical Case for Making Better People and How to Be Good: The Possibility of Moral Enhancement
Egg Freezing and the Law's Biological Clock
Presentation by Emily Jackson
Professor of Law at the London School of Economics and Political Science
Former Judicial Appointments Commissioner, and former Deputy Chair of the Human Fertilisation and Embryology Authority
'I See the Boys of Summer': Sex, Embryos and the Meaning of Life
Presentation by Dr Andy Greenfield
Principal Investigator and Programme Leader in Mammalian Sexual Development at the Medical Research Council's MRC Harwell research centre
Contributor to the project Basic Understanding of Genome Editing, and promoter of public engagement around genome editing
After the 'Need for a Father': Who Needs Section 13(5) of the Human Fertilisation and Embryology Act?
Presentation by Professor Ellie Lee
Professor of Family and Parenting Research, and Director of the Centre for Parenting Culture Studies, at the University of Kent
Leader of research into the way law and parenthood are understood in fertility clinics
Mums, Dads and Parents: Why UK Fertility Law Doesn't Go Far Enough in Recognising Diverse Modern Families
Presentation by Natalie Gamble
Solicitor, and Founder of Natalie Gamble Associates and Brilliant Beginnings
Has acted in groundbreaking cases, and helped change the law, in relation to assisted conception
Uncluttering Consent and Other Conundrums
James Lawford Davies
Solicitor, Partner at Hempsons, and Honorary Lecturer at University College London's Department of Biochemical Engineering
Has acted in groundbreaking cases in relation to assisted conception
A Landscape Guide for Patients: What the Eye in the Sky Can See
Presentation by Satu Rautakallio-Hokkanen
Chair of Fertility Europe
Secretary of Infertility Association Simpukka
How Did the Politics of Assisted Conception Change in Switzerland?
Presentation by Professor Christian de Geyter
Chair of ESHRE's European IVF Monitoring Steering Committee
Head of Reproductive Medicine and Gynaecological Endocrinology at the University Hospital Basel, and Leader of the University of Basel's Gynaecological Endocrinology Group
The Growth of the Fertility Industry Online: A Viable Option, or Underground and Unsafe?
Presentation by Erika Tranfield
Director and Cofounder of Pride Angel
Contributor to research (by the University of Cambridge's Centre for Family Research) into the experience of women who seek sperm donors online
Human/Animal Hybrid Embryos: What Was All the Fuss About?
Dr Evan Harris
Former Liberal Democrat MP for Oxford West and Abingdon
Member of the Public Bill Committee that scrutinised the Human Fertilisation and Embryology Act 2008 before it became law
Giving Birth Does Not a Mother Make
Presentation by Natalie Smith
Chair of Surrogacy UK's Working Group on Surrogacy Law Reform
Parent through surrogacy
Reproductive Law in Poland: Were All Problems Solved?
Presentation by Professor Robert Spaczyński
Poland's Chief National Consultant for Gynaecological Endocrinology and Reproductive Medicine
Clinician and researcher at the Gynaecology and Obstetrics Clinical Hospital of the Poznań University of Medical Sciences, and Vice President of the Polish Society of Gynaecologists and Obstetricians
'Social' Egg Freezing: How Did We Get Here?
Presentation by Dr Kylie Baldwin
Senior Lecturer in Health Studies and Sociology at De Montfort University
Medical Sociologist at the Centre for Reproduction Research and at the Health Policy Research Unit
Session chairs include:
Barbara Connolly QC
Barrister at 7 Bedford Row
Vice Chair of the International Bar Association's Family Law Committee, and Fellow of the International Academy of Family Lawyers
Tim Child
Medical Director of Oxford Fertility, Founding Director of the Fertility Partnership and Consultant Gynaecologist at the John Radcliffe Hospital's Women's Centre
Associate Professor of Reproductive Medicine and Surgery at the University of Oxford's Nuffield Department of Women's and Reproductive Health
Fiona Fox
Chair of Trustees at PET
Founder and Chief Executive of the Science Media Centre
Dr Roger Highfield
Director of External Affairs at the Science Museum Group
Produced and participated in numerous articles, videos, events and activities accompanying the Science Museum's exhibition IVF: Six Million Babies Later
Conference sponsors include:

PET is also busy preparing a free-to-attend public event - '40 Years of IVF: Past, Present and Future' - taking place in Edinburgh in the New Year, on the evening of Thursday 24 January.

The event is supported by the Scottish Government, and will mark the 40th birthday of the world's second ever IVF baby Alastair MacDonald - also the world's first IVF boy - who was born at Stobhill Hospital in Glasgow in January 1979.

Alastair himself will be speaking at this event, together with his mother Grace MacDonald (who was one of the original patients of the pioneers of IVF - Professor Sir Robert Edwards, Dr Patrick Steptoe and Jean Purdy).

The event will see Alastair and Grace look back on the circumstances of Alastair's conception, birth and childhood. They will be joined by Sally Cheshire, Professor Colin Duncan, Dr Kay Elder and Dr Abha Maheshwari, who will discuss not only the early days of IVF, but also how the world of fertility has evolved since and what its future holds.

The event will be chaired by PET Trustee Professor Allan Pacey. Find out more here, and email sstarr@progress.org.uk to book your free place(s).

After that, PET is running another free-to-attend public event - 'How Can We Make Surrogacy Law Deliver?' - in London on the evening of Wednesday 3 April.

PET is producing the event in partnership with the British Fertility Society (BFS). It will inform a joint project by the Law Commissions of Scotland and of England and Wales, to review surrogacy law and make recommendations for reform.

The event will be chaired by Dr Jane Stewart (Chair of the BFS) and speakers will include Professor Nick Hopkins (Law Commissioner responsible for Surrogacy at the Law Commission of England and Wales of England and Wales), together with Sarah Jones, Elizabeth Isaacs QC, Dr Imogen Goold and Dr Kirsty Horsey.

Find out more here, and email sstarr@progress.org.uk to book your free place(s).