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


The Second International Summit on Human Genome Editing 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.

Basic Understanding of Genome Editing' - a project carried out by the Progress Educational Trust in partnership with Genetic Alliance UK and funded by the Wellcome Trust 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.

Sarah Norcross - Director of the Progress Educational Trust (PET) - will give the Welcome Address at PET's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018 '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? Sir James Munby, former President of the Family Division of the High Court of Justice and keynote speaker at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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? Sally Cheshire, Chair of the Human Fertilisation and Embryology Authority and keynote speaker at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 Group Leader of the Francis Crick Institute's Human Embryo and Stem Cell Laboratory and speaker at 'Science Marches On: Key Scientific Developments' - Session 3 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 John Harris, Emeritus Professor of Bioethics at the University of Manchester and speaker at 'The Future of Fertility Law: What Must Change and When?' - Session 6 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 Emily Jackson, Professor of Law at the London School of Economics and Political Science and speaker at 'Society Marches On: Key Social Changes' - Session 2 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 Dr Andy Greenfield, Programme Leader in Mammalian Sexual Development at MRC Harwell and speaker at 'Science Marches On: Key Scientific Developments' - Session 3 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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? Professor Ellie Lee, Director of the University of Kent's Centre for Parenting Culture Studies and speaker at 'The Future of Fertility Law: What Must Change and When?' - Session 6 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 Natalie Gamble, Founder of Natalie Gamble Associates and speaker at 'Society Marches On: Key Social Changes' - Session 2 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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, Partner at Hempsons and speaker at 'The Future of Fertility Law: What Must Change and When?' - Session 6 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 Satu Rautakallio-Hokkanen, Chair of Fertility Europe and speaker at 'A Patchwork of Policies: Assisted Conception and Embryo Research in Europe' - Session 5 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
Presentation by Satu Rautakallio-Hokkanen
Chair of Fertility Europe
Secretary of Infertility Association Simpukka

How Did the Politics of Assisted Conception Change in Switzerland? Professor Christian de Geyter, Chair of the European Society of Human Reproduction and Embryology's European IVF Monitoring Steering Committee and speaker at 'A Patchwork of Policies: Assisted Conception and Embryo Research in Europe' - Session 5 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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? Erika Tranfield, Director and Cofounder of Pride Angel and speaker at 'Society Marches On: Key Social Changes' - Session 2 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 MP who scrutinised the Human Fertilisation and Embryology Act 2008 and speaker at 'Science Marches On: Key Scientific Developments' - Session 3 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 Natalie Smith, Chair of Surrogacy UK's Working Group on Surrogacy Law Reform and speaker at 'The Future of Fertility Law: What Must Change and When?' - Session 6 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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? Professor Robert Spaczyński, Poland's Chief National Consultant for Gynaecological Endocrinology and Reproductive Medicine and speaker at 'A Patchwork of Policies: Assisted Conception and Embryo Research in Europe' - Session 5 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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? Dr Kylie Baldwin, Senior Lecturer in Health Studies and Sociology at De Montfort University and speaker at 'Society Marches On: Key Social Changes' - Session 2 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 Barbara Connolly QC, Barrister at 7 Bedford Row and chair of Sir James Munby's Keynote Address at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 Tim Child, Medical Director of Oxford Fertility and chair of 'A Patchwork of Policies: Assisted Conception and Embryo Research in Europe' - Session 5 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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 Fiona Fox, Chair of Trustees at the Progress Educational Trust (PET) and chair of 'The Future of Fertility Law: What Must Change and When?' - Session 6 at PET's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
Chair of Trustees at PET
Founder and Chief Executive of the Science Media Centre

Dr Roger Highfield Dr Roger Highfield, Director of External Affairs at the Science Museum Group and chair of 'Science Marches On: Key Scientific Developments' - Session 3 at the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018
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:
The Anne McLaren Memorial Trust Fund, silver sponsor of the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018The Edwards and Steptoe Research Trust Fund, silver sponsor of the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018The European Society of Human Reproduction and Embryology, silver sponsor of the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018Ferring Pharmaceuticals, bronze sponsor of the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018The European Sperm Bank, bronze sponsor of the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018JMW Solicitors, bronze sponsor of the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018The London Women's Clinic, bronze sponsor of the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018Vitrolife, bronze sponsor of the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018The Institute of Medical Ethics has provided funding for eight medical students to attend the Progress Educational Trust's one-day conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', taking place at Amnesty International in London on Wednesday 5 December 2018

Alastair MacDonald, the second person ever born who was conceived via IVF and speaker at the Progress Educational Trust's FREE-to-attend event '40 Years of IVF: Past, Present and Future', taking place in Edinburgh on the evening of Thursday 24 January 2019 Grace MacDonald, the second woman ever to give birth to a child following IVF and speaker at the Progress Educational Trust's FREE-to-attend event '40 Years of IVF: Past, Present and Future', taking place in Edinburgh on the evening of Thursday 24 January 2019 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.

Dr Kay Elder, Senior Research Scientist at Bourn Hall Clinic and speaker at the Progress Educational Trust's FREE-to-attend event '40 Years of IVF: Past, Present and Future', taking place in Edinburgh on the evening of Thursday 24 January 2019 Colin Duncan, Professor of Reproductive Medicine and Science at the University of Edinburgh and speaker at the Progress Educational Trust's FREE-to-attend event '40 Years of IVF: Past, Present and Future', taking place in Edinburgh on the evening of Thursday 24 January 2019 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).

Dr Abha Maheshwari, Clinical Lead in Reproductive Medicine at the Aberdeen Fertility Centre and speaker at the Progress Educational Trust's FREE-to-attend event '40 Years of IVF: Past, Present and Future', taking place in Edinburgh on the evening of Thursday 24 January 2019 Professor Allan Pacey, Trustee at the Progress Educational Trust (PET) and chair of PET's FREE-to-attend event '40 Years of IVF: Past, Present and Future', taking place in Edinburgh on the evening of Thursday 24 January 2019 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).


Professor Nick Hopkins, Law Commissioner responsible for Surrogacy at the Law Commission of England and Wales and speaker at the Progress Educational Trust's FREE-to-attend event 'How Can We Make Surrogacy Law Deliver?', taking place at the Royal College of Obstetricians and Gynaecologists on the evening of Wednesday 3 April 2019 Dr Jane Stewart, Chair of the British Fertility Society and chair of the Progress Educational Trust's FREE-to-attend event 'Time Waits for No Man: The Impact of Age on Male Fertility', taking place at the Royal College of Physicians of Edinburgh on the evening of Wednesday 9 May 2018 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.

Sarah Jones, Chair of Trustees at Surrogacy UK and speaker at the Progress Educational Trust's FREE-to-attend event 'How Can We Make Surrogacy Law Deliver?', taking place at the Royal College of Obstetricians and Gynaecologists on the evening of Wednesday 3 April 2019 Elizabeth Isaacs QC, Barrister at St Ives Chambers and speaker at the Progress Educational Trust's FREE-to-attend event 'How Can We Make Surrogacy Law Deliver?', taking place at the Royal College of Obstetricians and Gynaecologists on the evening of Wednesday 3 April 2019 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).