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Oral evidence presented to My Science Inquiry, an Inquiry by the Science and Technology Select Committee of the UK Parliament's House of Commons

1 February 2017
This policy document is a transcript of oral evidence presented by the Progress Educational Trust (PET)'s Communications Officer Sandy Starr to My Science Inquiry, an Inquiry by the Science and Technology Select Committee of the UK Parliament's House of Commons.

Stephen Metcalfe (Conservative MP for South Basildon and East Thurrock)
Good morning, everyone. Welcome, and thank you for taking time to join us for My Science Inquiry.
Time is tight so I am going to call our first presenter, Sandy Starr. Please, come forward and take the podium.
Sandy is from the Progress Educational Trust, and is going to talk to us about human embryo research. Sandy, you have 10 minutes. Thank you.

Sandy Starr (Communications Officer at the Progress Educational Trust)
Research using human embryos can only be conducted legally in the UK with a licence from the regulator, the Human Fertilisation and Embryology Authority. But even a licensed researcher will be in breach of the law if they do one of the following two things.
If they keep a human embryo alive in the laboratory for more than 14 days.
If they keep a human embryo alive in the laboratory after observing the appearance of a feature called the primitive streak.
These stipulations are often referred to by the shorthand 'the 14‑day rule'.
The charity I work for - the Progress Educational Trust - believes that, in light of recent developments and current debates, the time is right for this Committee to conduct an inquiry into whether there is a case for extending the 14‑day rule.
The idea of a 14‑day rule was first proposed in 1979 by the Ethics Advisory Board of the USA's Department of Health, Education, and Welfare. The idea was then proposed in the UK in the 1984 Warnock Report, which was commissioned by the UK Government and written by a committee led by Mary Warnock - now Baroness Warnock, the Patron of our charity. The rule was brought into law with the Human Fertilisation and Embryology Act 1990, and has since been emulated in various countries around the world.
The reason 14 days was chosen by the Warnock committee was because it corresponded roughly with - in fact, it slightly preceded - the expected appearance of the primitive streak. The primitive streak represents the earliest beginnings of the symmetry of the eventual human organism.
The primitive streak does not represent, as is often misleadingly suggested, the beginnings of the spinal cord or the nervous system. Rather, it represents the beginning of a process that sees part of the embryo divided into three layers of cells. It is out of one of these three layers that the beginnings of the nervous system, including the beginnings of the spinal cord, will eventually emerge.
It has long been possible to keep the cells of a human embryo alive for a continuous extended period - in other words, to culture an embryo - in the laboratory while it loses what coherence and structure it has and loses any prospect of the primitive streak appearing. Indeed, the British IVF pioneer and future Nobel laureate Professor Robert Edwards described doing precisely this for a period of 13 days, in a paper that was published before the Warnock Report.
But what no researcher was able to do was keep a human embryo alive in the laboratory while having the embryo retain its emerging coherence and structure for much longer than a week, which is approaching the point when the embryo would normally implant in the lining of the uterus. However, in May 2016 the Cambridge‑based researcher Professor Magdalena Zernicka‑Goetz published papers - in Nature Cell Biology, and in Nature - explaining how she and her colleagues had succeeded in keeping human embryos alive in the laboratory for 13 days, by culturing them in specially devised conditions.
Embryos still alive at 13 days were destroyed, so as not to be in breach of the law. Whether or not the conditions devised could support the life of an embryo beyond 14 days, or whether that would require further innovation, is - as yet - unknown.
To say that this achievement has had a significant impact would be an understatement. Since May last year, there has been continuous high‑profile debate and discussion in both specialist and lay circles about the discoveries that could be made, and the benefits that might accrue to science and medicine, if human embryos were developed beyond 14 days.
The third and fourth weeks of embryo development are part of a period known as the 'black box', because up until now there has been little or no opportunity for direct observation of the developing embryo during this period. It is a period in which crucial but poorly understood events in the development of the embryo can go awry - leading to loss of pregnancy, or disorders of pregnancy, or causing or contributing to congenital disease in a resulting child, or perhaps even diseases that arise later in life.
A number of researchers and clinicians are arguing that by studying embryo development in the third and fourth weeks in the laboratory - by looking into this 'black box' - they could unravel some of these mysteries, better treat or avoid disease, and improve IVF success rates. This is an exciting prospect, both scientifically and ethically. But it also raises ethical concerns, and - from some quarters - strong ethical objections. And these have been very much a part of the debate that has taken place, since these papers by Professor Zernicka‑Goetz and colleagues were published in May 2016.
Consequently, there is already a rich body of material that an inquiry on this subject could draw upon, and a rich variety of experts and stakeholders from various disciplines whom this Committee could approach for evidence on this topic.
Our own charity, the Progress Educational Trust, recently held a major conference on the science and ethics of this issue where speakers included Baroness Warnock and Professor Zernicka‑Goetz.
The Nuffield Council on Bioethics has also held a recent discussion of the issue, and a report of those proceedings is due to be published imminently.
The issue has been widely discussed everywhere from Science magazine to The Sun newspaper . Professor Zernicka‑Goetz's studies won in the 'People's Choice' category of Science magazine's 2016 'Breakthrough of the Year', voted for by the readers of that magazine. (To give some perspective, the runner-up in the people's choice category was the first ever observation of gravitational waves.)
Only last month, BBC Radio 4 broadcast a two‑part documentary on the issue entitled Revisiting the 14‑Day Rule. The BBC commissioned an opinion poll by YouGov to accompany its documentary, asking the general public whether they would support a revision of the 14‑day rule, and - if so - what sort of revision they might support.
The poll showed that almost half the British public - 48% - would support a doubling of the 14‑day limit to 28 days. 19% think the limit should remain at 14 days, 10% would like human embryo research to be prohibited entirely, and 23% are unsure of where they stand on the issue.
In conclusion, the UK has long been a world leader not only of the science of embryo research and the practice of fertility treatment, but of public debate, ethical and legal consideration, and progressive but careful and trusted regulation of these fields.
Our charity believes this is a tradition worth upholding, and a reputation worth maintaining. This is why we are asking this Committee to examine the issue of the 14‑day rule now. The issue falls very much within the remit of this Committee, and we believe an inquiry into the matter would be both timely and constructive. Thank you.

Stephen Metcalfe (Conservative MP for South Basildon and East Thurrock)
Thank you very much for your informative and timely presentation. Excellent.

Dr Tania Mathias (Conservative MP for Twickenham)
That was brilliant and really clear, thank you so much.
My only question is, do you think if we were to scrutinise this, it would be useful for us to get information from other countries where they go beyond the 14 days?

Sandy Starr (Communications Officer at the Progress Educational Trust)
Yes, I do think that would be useful. This is a debate that is taking place internationally.
Harvard University held a conference on the subject in November. A law lecturer in Australia, Dr Patrick Foong, has just issued a call for debate about the rule to begin in earnest there.
There are at least 11 countries besides the UK that have some version of the 14‑day rule written in their laws. A further five countries have a version written into their national scientific guidelines, and the rule is promulgated through some international guidelines as well.
The key thing to understand is that Professor Zernicka‑Goetz's papers mean that viable protocols for developing a human embryo up to (and possibly beyond) 14 days are now publicly available, to any researcher in the world who wishes to try.

Stephen Metcalfe (Conservative MP for South Basildon and East Thurrock)
In terms of the scale of the inquiry that we might conduct, are you suggesting that we as a Committee should look at examining the 14 days and make a recommendation to extend it perhaps to 28?
Or are you suggesting that we look at whether the time is right for the science around that issue to be handed to an independent inquiry to come up with the final answer, if you see the subtle difference?

Sandy Starr (Communications Officer at the Progress Educational Trust)
Yes. I do not know if this helps answer your question, but there is a useful precedent for this in the recent examination of the issue of mitochondrial donation, in that an inquiry by this Committee could form the initial basis for a public consultation exercise by the Human Fertilisation and Embryology Authority.
The Chair and the Director of Strategy of that regulator were both interviewed in the Radio 4 programme, and indicated that they think it would be appropriate to conduct such an exercise if they were asked to by Parliament or by Government.

Stephen Metcalfe (Conservative MP for South Basildon and East Thurrock)
Fantastic, thank you very much indeed. Are there any other comments from colleagues? No.
In which case, thank you very much for your very clear and precise presentation. It was very informative.