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Grants and awards

The Trustees funded 12 bursaries for younger scientists and doctors to attend the Futures in Reproduction Conference in December 2012.

They also and supported a clinical student for her research project on her elective at the University of Sydney, in 2013.

On the 2nd December 2014, the trustees supported a session at the Progress Educational Trust annual conference on The Commercialisation of Life, held at London's Institute of Child Health. The session comprised a panel consisting of Dr Claire Gerada, Dr Stuart Hogarth, Dr Kari Stefánsson and Vivienne Parry discussed the future of healthcare in a world where genetics, technology and 'Big Data' are increasingly centre stage. This session could not have been better timed, as the conference coincided with the UK launch of a direct-to-consumer genetic test by the company 23andMe.

On the 7th December 2015, the trustees supported a session entitled “Three-person IVF?“ at the Progress Educational Trust annual conference on From Three-Person IVF to Genome Editing: The Science and Ethics of Engineering the Embryo, held at London's Institute of Child Health. First off in the session was Doug Turnbull, Director Wellcome Trust Centre for Mitochondrial Research, who spoke about the clinical need for mitochondrial donation? He was followed by Dame Sally Cheshire, Chair of the HFEA, who spoke about the regulatory position and why that makes the UK the best place for research on and treatment with mitochondrial donation. The last speaker was Viscount Matt Ridley, who described the way the House of Lords handled the legislation.

On the 17th October 2016, the trust supported a meeting organised by the Progress Educational Trust (PET) entitled: Birth Certificates and Assisted Reproduction: Setting the Record Straight?
 
There have been conflicting opinions on these matters since at least 1837, when responsibility for registering English births passed from the Church of England to the General Register Office. But the advent of assisted reproduction, and the emergence of new family forms, have raised challenging new questions about the purpose and content of birth certificates. Consequently, the Law Commission is considering whether to review the law in this area.

Birth certificates have already been affected by changes in UK fertility law. For example, it is now possible for two people of the same sex to appear as parents on a birth certificate. However, the UK law that directly governs birth certificates has remained largely unchanged since 1953, 25 years before the first IVF baby was even born. This law stipulates that no more than two parents can appear on a birth certificate, but does not stipulate that these parents must be biologically related to the child.

Recent years have seen growing social acceptance of non-traditional family forms including single parents, same-sex parents, transgender parents and co-parents. These developments have gone hand-in-hand with advances in science and medicine, creating scenarios that could scarcely have been envisaged by policymakers in 1953 (much less in 1837). For example:

  • A child can be created with sperm, eggs or embryos donated by a third party.
  • Intending parents can arrange for a surrogate to carry a child.
  • A transgender person can preserve their sperm or eggs, transition to a different gender (whereupon - if they apply successfully to have their their acquired gender legally recognised in the UK - they will be issued with a new birth certificate), and then conceive a child using their preserved gametes.
  • In the UK, it is legal to conceive a child using genetic material from three people - two parents plus an anonymous mitochondrial donor - in order to avoid the transmission of inherited mitochondrial disease.
  • When IVF is combined with the possibility of freezing sperm, eggs or embryos, conception and/or birth can take place without either of the biological parents even having to be alive.
  • Administrative errors during fertility treatment can result in women having to adopt their own children, or - conversely - being wrongly listed as a child's mother.
  • Scenarios like those above are further complicated when a child is conceived and/or born overseas - an increasingly common situation, with the rise of cross-border reproductive care.

In light of all these developments, was it timely to review the UK law on birth certificates? Or could changing the law in this area give rise to more problems than it solves?

If we decide to change birth certificates, do we want them to serve as a more accurate records of biological facts? For example, should birth certificates include details of any form of assisted reproduction that was used?

Alternatively, do we want to change birth certificates so they are better able to reflect non-biological facts? In the Canadian province of British Columbia, for example, it is now possible to list up to four parents on a birth certificate. Speakers discussing these issues  under the chairmanship of Professor Peter Braude were

  • Dr Marilyn Crawshaw
    Chair of the British Association of Social Workers' Project Group on Assisted Reproduction
  • Natalie Gamble
    Solicitor and Founder of Natalie Gamble Associates and Brilliant Beginnings
  • Kate Litwinczuk
    Donor-conceived person
  • Dr Julie McCandless
    Assistant Professor of Medical and Family Law at the London School of Economics and Political Science
  • Craig Reisser
    Development and International Programmes Director for Oregon Reproductive Medicine
  • Steven Snyder
    Founding and Principal Partner at Steven H Snyder  and Associates

In 2017, the trustees agreed to support a session at the 2017 Annual Conference of the Progress Educational Trust (PET) 'Crossing Frontiers: Moving the Boundaries of Human Reproduction' entitled: 'Revolutionising Reproduction: Setting a New Moral Compass'.

Researchers and clinicians are increasingly pushing at the boundaries of human reproduction – biologically, legally, ethically and geographically. This is not unprecedented – artificial insemination dates back at least as far as the 19th century, and the birth of the world's first IVF baby Louise Brown just under 40 years ago inaugurated an era of assisted conception which has had an enormous and beneficial impact on humanity.  But even by the standards of this fast-moving field, recent years have seen a succession of breakthroughs and headlines that have challenged the terrain on which we consider the creation of human life. These developments have included:

 

  • The advent of mitochondrial donation – that is, techniques for conceiving children with genetic material from three people, in order to avoid the transmission of mitochondrial disease.
  • The advent of genome editing – the deliberate alteration of selected DNA sequences in living cells. This has long been possible, but it has become much more precise and practicable since the CRISPR approach to genome editing was pioneered in 2012.
  • The possibility of keeping human embryos alive in the laboratory, while retaining their structure and coherence, for up to (and beyond?) 14 days – a limit that has long since been established in law, but that it was not scientifically possible to breach before now.
  • The possibility of partial or complete IVG (in vitro gametogenesis), where sperm or eggs are created in the laboratory rather than in the gonads of a person of the corresponding sex.
  • The advent of SHEEFs (synthetic human entities with embryo-like features) – structures which have emerged during stem cell research (in both humans and animals) which share some features with embryos.
  • Ongoing research into the creation and use of ACHM (animals containing human material) which can be transgenic, chimaeric or hybrid.

These are still new frontiers. The world's first baby conceived via mitochondrial donation was born in 2016, the use of genome editing in the clinic is currently restricted to somatic rather than germline applications (and even those are experimental), there has as yet been no known breach of the 14-day limit, and the uses of IVG, SHEEFs and ACHM are strictly confined to a research context at the present time.

Nonetheless, developments on all of these fronts have prompted widespread news coverage, as well as febrile speculation about future developments and no small amount of consternation. A key challenge has been how to develop common principles and regulations at an international level – there have been high-profile reports and policy pronouncements on some of these areas, but it remains difficult to reach consensus.

Furthermore, regulation is limited in its international reach. Both the science and regulation of mitochondrial donation were pioneered in the UK, which in 2015 became the first country to legislate for this technology. However, in May 2016 the world's first baby conceived in this way was born in Mexico to Jordanian parents, following treatment by a Chinese clinician based in the USA. In that instance the clinician was seeking to avoid the transmission of mitochondrial disease, which is the specific purpose for which these techniques were developed. However, the next baby to be born who had  allegedly been conceived in this way – in Ukraine in 2017 – followed the use of the same techniques as an unorthodox treatment for infertility (an application for which there is little or no evidence of effectiveness).  These examples raised fears of 'jurisdiction shopping', where clinicians travel to jurisdictions for the express purpose of using experimental techniques that would either be prohibited or more stringently regulated elsewhere. Many regard this as a grave problem, while others are more sanguine – the latter regard it as a legitimate (or at least expected) gamble for clinicians and patients alike to cross borders, carrying out or undergoing experimental treatments.

Various avenues of research, treatment and regulation were explored in detail during earlier sessions at the 'Crossing Frontiers: Moving the Boundaries of Human Reproduction' conference. The purpose of the concluding session was to draw these themes together, and consider how best to make moral sense of current frontiers and future possibilities in human reproduction.

During the period in which they pioneered IVF, Robert Edwards and Patrick Steptoe broke new scientific and ethical ground. They were in uncharted waters, bringing fertilisation and early embryo development out of the human body for the first time in the history of our species. At the same time, they were not completely adrift in these waters – both as human beings and as professionals, they were guided by their own thought-through principles and priorities and also by a sense of duty to patients.  The example of Edwards and Steptoe is instructive, as new possibilities in the science and medicine of reproduction once again require us to chart a course through unfamiliar waters. It is sometimes forgotten that Robert Edwards described culturing embryos for 13 days in a paper that was published shortly before the Warnock report ('Human chorionic gonadotropin secreted by preimplantation embryos cultured in vitro', Science, 1984) and it was only clarified by the regulator in later years that the embryos in question did not constitute embryos in the legal sense (as they had become disorganised and incapable of implanting).

The session was chaired by
Fiona Fox (Chief Executive of the Science Media Centre) and had the following speakers, representing a diverse range of perspectives on this area:

  • Dr Anna Smajdor (Associate Professor of Practical Philosophy at the University of Oslo) who argued that natural conception is increasingly at odds with Western values and that assisted conception may eventually become the norm.

  • Philippa Taylor (Head of Public Policy at the Christian Medical Fellowship) who presented the view that even if a technology is shown to be safe, popular and expedient, it does not necessarily follow that it should be permitted. She voiced her support for somatic genome editing as a potential way to treat disease, but argued that germline editing raises insurmountable moral obstacles.

  • Professor Guido Pennings (Director of the Bioethics Institute Ghent) who offered a very different view to this. He argued that genome editing can and should afford new possibilities of removing multiple deleterious mutations from embryos, rather than patients and practitioners being obliged to choose a single embryo for transfer when their options and their knowledge are limited.

 

 

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Professor Martin Johnson
Chief Executive Officer
The Edwards-Steptoe Research Trust
The Anatomy School
Department of Physiology, Development & Neuroscience
Downing Street
Cambridge CB2 3DY
UK