Mark Henderson, Science Editor
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Once the House of Commons has voted on the Human Fertilisation and Embryology Bill, the task of implementing the legislation will fall in large part to Lisa Jardine.
On April 1 the Professor of Renaissance Studies at Queen Mary, University of London, started work as head of the Human Fertilisation and Embryology Authority (HFEA), which oversees IVF clinics and embryo research.
She has had something of a baptism of fire. On her first day it emerged that scientists at the University of Newcastle upon Tyne had created Britain’s first human-animal embryos, under the terms of a licence granted by the regulator in January.
And on Tuesday a Christian group announced that it was seeking judicial review of the authority’s decision to approve the Newcastle experiments, and those planned by a second team at King’s College London.
In her first interview since starting the job, Professor Jardine told The Times that while she could not comment on details of the pending legislation, she felt some religious opponents had been less than open about the root of their objections.
Senior Roman Catholics, such as Cardinal Keith O’Brien, who has described hybrid embryos as “experiments of Frankenstein proportion”, are theologically opposed to all areas of medicine and research in which embryos are destroyed, she said.
“The elephant in the room of the current discussion in — let’s call it the vocal Catholic constituency — is that they don’t approve of IVF because embryos are destroyed,” she said. “So when I’m listening to the strenuous and very concerned expressions of anxiety around hybrid embryos, an important element is missing.”
She was equally critical, however, of the Newcastle researchers’ decision to discuss their early experiments with the BBC, before the results had been published or peer-reviewed. “Scientists are a trusted community because they use peer-review, ethics committees, publication in journals and repeatability of outcomes in a way that is exemplary for all areas of intellectual life,” she said. “The regulator stands side by side with scientists, in a dialogue between them from which each learns. However, priority is such a big issue in this area that there’s a huge temptation to jump the gun, which is not very helpful.
“I do think last week’s events have really shown that elegantly. We were proceeding very nicely with where we’d got to, with an enormous amount of discussion, consultation, taking of ethical soundings, leading towards the new Act. But when researchers are in a hurry, then you lose that moral advantage. It’s a bit like somebody bursting a paper bag behind your head.”
Her approach to the broader aspects of the job, Professor Jardine said, will be informed by her growing realisation about the impact infertility has on society.
A few days after her appointment was announced in January, she went on holiday and fell into conversation with three women around a hotel swimming pool. “To my astonishment, all three had had fertility problems,” Professor Jardine said. “One had not had IVF because her husband wouldn’t agree, but two had had it, one successfully and one unsuccessfully. I was completely stunned. There was nothing special about those three women.”
It underlined to her how many lives are affected by infertility, IVF and donor insemination, the areas she is now in charge of regulating.
“Fertility touches everybody, absolutely everybody in the land,” she said. “One in seven couples has fertility problems. It is something people need to know about, a bit like everybody needs to know how to wire a plug.”
She considers building this knowledge to be a critical part of her role at the HFEA, quite as important as its statutory responsibilities to oversee fertility clinics and embryo research.
Though Professor Jardine is a historian of science who thought herself quite well versed in modern medical procedures, she said the limits of her own understanding had been exposed. “Until I was inside the authority, I don’t think I fully understood the process of IVF itself,” she said. “The invasiveness, the duration, the use of drugs, the complexity of combining attempts to reproduce under those circumstances with a normal life.
“It is absolutely a part of my brief to communicate that, to enable people to make informed decisions. People may not be informed, but the HFEA’s regulation touches everybody.”
One thing that surprised her was that so little fertility treatment is performed on the NHS in Britain — about 80 per cent is private. But, despite her strong views on the importance of fertility issues to everyday life, she is unconvinced by the case for much wider NHS provision. “What you’re asking me is about entitlement, and we live in a world in which there are very few things you’re entitled to,” she said.
“I think we know that immediately life-threatening conditions entitle you to treatment, but I can’t get much beyond that. If it were available there would be less heartbreak. But there’s heartbreak in lots of areas of medicine that aren’t available on the NHS. I don’t have a view.”
Professor Jardine is herself in remission from breast cancer, which has made her acutely aware of how NHS services have to be rationed. “I’ve come out of one NHS resource-guzzling area. This is quite serious: when people around me are wanting Herceptin at a cost of £20,000 a year, what can I say about competition between areas of health-related treatment?”
She also questioned the claim, often made by fertility specialists such as Lord Winston who campaign for wider NHS access, that infertility is a disease. “I understand where those clinicians are coming from. Personally, I don’t think it’s helpful.
“Infertility is not for most people life-threatening. I don’t want to call pregnancy a disease, I do want to call cancer a disease, but I’m not sure what to do with infertility.”
The in-tray
— To oversee the introduction of changes to IVF and research law included in the Human Fertilisation and Embryology Bill. These include the proposed end of the “need for a father” in fertility treatment, new rules for embryo screening, and regulation of human-animal embryos
— To reduce the rate of multiple births, through measures to encourage single-embryo transfers
— To restore firm leadership and doctors’ confidence in the HFEA, which has been run by an interim chairman and chief executive for the past few months
— To manage patient information, so that data on clinics’ success and error rates is better presented
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Judy of Liverpool, why should the huge amount of tax that I and my partner pay be spent on anything that is not of immediate concern to myself or my partner ?
Well,let me tell you, it's because we believe in a society that cares about others and their heartache. Maybe that's a concept that you might think about. I wonder how much of my taxes are spent on issues that are important to you but not to myself?
Even if one considers your arguement in the stark terms you present then cold logic dictates that children born from IVF massively over pay back that financial debt through the contribution of their own taxes when they reach adulthood.
Your ill thought out statement fails to convince both in terms of heart and head!
steve duffy, brentwood, essex
Judy From Liverpool. Can I just reply to your message about funding "our childlessness". From your message my understanding is that you have not had any problems with having children as you wouldn't write a message such as the one you have done if you too knew what infertility issues felt like to an individual. Can I just say that myself and partner pay over £2000 per month in tax to this country and claim absolutley nothing back in return! Perhaps you would be better redirecting your message to the true scroungers of this country who pay no tax and yet bleed us dry!
Nicola, Wirral ,
I was very disapointed that an argument as emotive as cancer funding should be used to defend the NHSs poor funding of fertility treatment. Especially by someone representing the HFEA. Much as suffering cancer has given her a very distinct view of the disease and it's place in the hierarchy of NHS funding,suffering infertility (through my husband) has changed my life and made me aware that adequate treatment on the NHS is vital. It is my opinion that the majority of couples that seek and make a commitment to going thruogh with fertility treatment are the sort of potential parents that this country needs more of and providing teatment should be looked on a helping the countries future rather than a drain on resources. To those that endlessly argue "why should my taxes fund your child" I ask, why should I fund treatment for diseases caused by your lifestyle choices?Why should I fund schools, vaccination programmes etc.....it's part of being a responsible citizen.
Karen, Glasgow, Scotland
"Fairer access to funding"?......Tricia of Islington. Why should I as a taxpayer fund your childlessness at all? Isn't this your problem and not that of the rest of the nation?
judy, Liverpool, England
How terribly sad the NICE recognise the importance of NHS provision of infertility treatment and yet the new Head of the HFEA admits she "is not sure what to do with infertility." Going further by saying that those of us who campaign for fairer access to funding aren't helpful.
I find this really disgusting that someone having so much power and yet so little empathy or understanding for those of us who find ourselves living with infertility.
It is OK for those who choose not to have children; for those of us are involuntarily childless who already have to fight for fairer access to funded treatment the fight now feels it will get even harder.
Tricia
Disgusted of Islington
Tricia, Islington, London, UK
I am aware that some of the comments may have been reproduced out of context, however on behalf of patients I have to voice our concerns and point out that unlike Professor Jardine we know exactly how to classify infertility. Infertility may not be a life threatening condition but it is totally life changing. There is only one thing worse than finding out that you cannot have a baby and that is discovering that you cannot access the treatment which may help, treatment which was recommended by NICE and endorsed by the Government in 2004. We know that the NHS limited resources and only ask for a fair share which was promised to them. Patients are being let down by a system which is at the moment totally inequitable. I hope that as she continues with her role Professor Jardine comes to understand the devastating impact which infertility has and works with patients and patient groups to improve the quality, effectiveness and access to treatment which any patient in the UK deserves
Susan Seenan, Irvine, UK