This week at the Progress Educational Trust (12 October 2016)
The Progress Educational Trust (PET) is busy organising, speaking at and exhibiting at a wide variety of public events - detailed below - as well as commenting on fast-moving developments in science and medicine.
It was recently announced that a child born in Mexico earlier this year was conceived via mitochondrial donation, in order to avoid the transmission of mitochondrial disease - the world's first known birth of a child conceived via such a technique. There are also reports of mitochondrial donation being used as an unorthodox form of fertility treatment in Ukraine.
PET was instrumental in changing the UK's laws so that such techniques could be permitted in treatment, specifically for the purpose of avoiding the transmission of mitochondrial disease. The charity has taken a measured approach to this latest news, with PET Director Sarah Norcross giving a number of interviews in the national media to put the matter in perspective.
Sarah was interviewed on BBC Radio 4's Today programme, alongside mitochondrial donation pioneer Professor Sir Doug Turnbull. This is what she had to say to presenter Sarah Montague.
'We need to be clear, there are two situations here. Where people are trying to avoid passing on inherited mitochondrial disease, that's one thing. Those women are usually fertile, and they're trying to avoid having a baby with this very serious condition. And you don't want to go to a jurisdiction where there is little regulation, where corners may be cut, and where that really desired outcome of a healthy baby may not be achieved.
'When we're talking about going overseas because you're failing to get pregnant, because you've got an infertility problem, then it's quite different. There doesn't seem to be any evidence that this works. As I've said, women who have this problem with their mitochondria are usually fertile. There's no proven case that this is going to help you get pregnant if you've got a fertility problem. You're at best wasting your money, and at worst putting yourself at risk.'
Listen to the full interview here.
Sarah gets the final word in this BBC News article on the matter, saying: 'For British women who wish to avoid passing mitochondrial disease to their children, the temptation to travel overseas to access these treatments must be enormous. We would caution against this. At present, there are too many unanswered questions about what has been achieved - and how - for us to be confident of patient safety.'
'This baby has been born in Mexico. We were sort of expecting the first baby to be born in the UK, because we've actively legislated to permit this to happen here. In Mexico, there is no legislation or regulation around this, and the doctor who's done it has only published an abstract about his work. So the details we've got are sketchy at the moment. Hopefully, all is as it seems and this is a really good news story.'
You can watch the full programme (and admire Sarah's 'I ♥ BioNews' badge) here. The relevant item begins at the 25:10 mark.
Sarah was interviewed on ITV News, saying: 'Part of me is cautious. I don't know enough information for me to be 100% certain that everything is as I would like it to be, to be really celebrating.' You can watch that item here.
Finally, Sarah was interviewed for this article in iNews, where she said: 'The baby appears healthy, which is fantastic, but has John Zhang treated other couples before this success? Is the technique reproducible? Did he just get lucky? We don't know. In the UK we have bent over backwards that this technique is done with patient safety in mind and there is a certain amount of secrecy as to what went on in Mexico.'
PET has published a BioNews article by a Mexican bioethics researcher, examining the potential impact in Mexico of Dr Zhang's decision to treat his patient there, as well as a follow-up article examining the impact on attitudes in the West. To be kept updated with this issue, and all the other issues discussed below, subscribe to BioNews for free.
Another subject Sarah has been discussing across the national and local media, in her capacity as Co-Chair of the campaigning organisation Fertility Fairness, is shortcomings in the public funding of fertility treatment.
Sarah has been discussing the issue on BBC News and ITV News - watch her ITV interview here - and has been interviewed on radio by:
Finally, Sarah has been quoted in this opinion piece by Yasmin Alibhai-Brown in iNews, while her comments to Nick Robinson on the Today programme are referred to in this opinion piece by Polly Toynbee in the Guardian.
Meanwhile, PET's next free-to-attend public event - taking place in Edinburgh on the evening of Tuesday 25 October - is entitled 'Frozen Assets? Preserving Sperm, Eggs and Embryos'. This event, which is supported by the Scottish Government, will address preserving fertility when there is a medical need - when being treated for cancer or other conditions, when transitioning gender, or when entering a high-risk occupation.
The speaker panel includes Professor Richard Anderson (Head of Obstetrics and Gynaecology at the University of Edinburgh), Alison McTavish (Cofounder and Nurse Manager at Aberdeen Fertility Centre), Dr Mary Neal (Director of Teaching and Learning at the University of Strathclyde's Law School) and Professor Allan Pacey (PET Trustee and Head of Andrology at Jessop Fertility).
'Rethinking the Ethics of Embryo Research: Genome Editing, 14 Days and Beyond' is PET's Annual Conference, taking place in London on Wednesday 7 December. The conference is supported by Merck, the Anne McLaren Memorial Trust Fund, the Medical Research Council and Caribou Biosciences.
Conference sessions include 'The Warnock Report and the 14 Day Rule', 'The 14 Day Rule: Calling Time on Embryo Research', 'Genome Editing: CRISPR at the Cutting Edge', 'What's So Special about the Status of the Embryo?', and Keynote Addresses by Baroness Mary Warnock and Professor Sir Ian Wilmut.
Other confirmed speakers and chairs include Professor Magdalena Zernicka-Goetz, Dr Kathy Niakan, Lord George Carey, Sally Cheshire, Dr Simon Fishel, Professor Bruce Whitelaw and Professors Sarah Franklin, David Jones, Alison Murdoch and Stephen Wilkinson.
Again, the topics covered could not be more timely, with the news that scientists hace edited the genomes of healthy human embryos for the first time. Furthermore, the Nuffield Council on Bioethics has just published a report on the ethics of genome editing - after gathering evidence from organisations including PET - and has announced that the use of genome editing in human reproduction will be a key focus of the next phase of its work.
Click here for full details of PET's 7 December conference, including the agenda and how to book your tickets, and email with any queries. Also follow the conference on Twitter and tweet about it using the hashtag #petconf16, and join the Facebook page for the conference here.
Besides working on upcoming events, PET has been going through audience feedback from its recent public event 'Testing, Testing 1, 2, 3: PGS and PGD'.
Despite taking place on one of the hottest days of the year, this event saw London's Institute of Child Health packed to the rafters with an audience of 250 people, who spent two hours debating the testing and screening human embryos with a panel of experts including Dr Tony Gordon, James Lawford Davies and Professor Michael Parker plus PET Trustees Dr Sue Avery and Dr Christine Patch.
Comments PET has received from attendees include:
PET is very grateful to the event's sponsor Illumina and to a crack team of volunteers - including Dr Nicoletta Charolidi, Kerry Dyus, Dr Cathy Herbrand, Daniel Malynn and Clara Salice, plus a number of new faces - without whom the event would not have been possible.
As well as producing its own events, PET has been exhibiting at other organisations' events, most recently at the Annual Conference of the British Society for Genetic Medicine. Sarah Norcross ran the exhibition stand together with PET Communications Officer Sandy Starr, while the conference was also attended by PET's Patron Professor Marcus Pembrey.
Sandy has also been busy at two other genetics-focused events. First he attended 'Who Owns My Genome?', a discussion organised by the British Science Association and Genomics England, which was chaired by PET's Chair of Trustees Fiona Fox. Then he attended the Annual Conference of Genetic Alliance UK, a charity with which PET has long enjoyed a close relationship.
Sarah been similarly busy at a variety of recent events.
Like Sarah, PET Trustee Professor Allan Pacey has been busy in the media.
Most recently, Allan was interviewed for a BBC2 documentary entitled Fertility and Me. Watch a clip from the programme here (in which Allan illustrates testicular size for the benefit of The One Show's Alex Jones), watch the entire programme here, and read this accompanying article by Allan on the BBC's iWonder website.
Allan is also quoted in this recent article in the Guardian newspaper about sperm donation, secrecy and genetics. And he has been speaking at a number of public and professional events including the Festival of the Mind in Sheffield, where he recently gave a talk on 'The Journey of Reproductive Life'.
Finally, Allan has been speaking about fertility preservation at two locations almost 7,000 kilometres apart. He gave a talk on 'Fertility and Future Options' in Leeds as part of an event organised by the Teenage Cancer Trust, and he gave a talk on 'Sperm Freezing' in New Delhi as part of the World Congress of the International Federation of Fertility Societies.
If you want to hear what Allan has to say about fertility preservation, and you're based in the UK, rest assured that you won't have to travel 7,000 kilometres. Allan is one of the speakers at PET's 'Frozen Assets?' event in Edinburgh on Tuesday 25 October, full details of which can be found here.