We need to use gene editing wisely but also embrace its vast potential | Mary Warnock

The Royal Society has recently published the results of an extensive survey of the attitudes of the general public to genetic modification. This sent my mind back to 1990, when the human fertilisation and embryology bill was going through parliament.

The emphasis, at least in the House of Lords, where the bill started, very soon switched from remedies for infertility to the new concept of eliminating some heritable diseases. IVF could be used to select embryos in the laboratory that did not carry the disease and implant one or two of those in the mother’s uterus. At the time, it was also speculated that one day it might be possible to eliminate a faulty gene from a live embryo after a pregnancy had been established, rather than at the pre-implantation stage.

I remember being astonished by how little this had to do with infertility, which was, after all, in the title of the bill, and what the committee I chaired had been set up to consider.

It came about almost entirely because of the enthusiasm of a then newly appointed crossbencher, Lord Walton of Detchant, who was a neurologist especially concerned with the condition of Duchenne muscular dystrophy, a heritable disease for which there was no cure. The bill became law as much because of his persuasiveness in the matter of genetic modification as because of the help it would afford to those suffering from infertility.

But the procedures that John Walton foresaw took very much longer to come into practice than he had expected and we are now again considering the issues that arise from genetic modification in humans, though this time not only embryonic humans.

The Royal Society survey is an extremely careful investigation of the views of three panels of “ordinary” people, based in London, Norwich and Edinburgh, concerned, respectively, with genetic modification of humans, plants and animals other than human.

The survey was carried out over a considerable period and with a great deal of internal communication. It is not surprising, therefore, that people changed their minds, or modified their opinions, during the course of the inquiry. But one thing that emerges most clearly from the report is the common thirst for more knowledge. Again and again, participants complained that they were inhibited from expressing an opinion about new developments in the field by their ignorance of which therapies were currently being used and which were in the pipeline.

The motivating force behind the survey was the thought that the new possibilities of curing disease by genetic modification could be of benefit to large numbers of people, many of whom suffered from conditions hitherto untreatable. It is therefore essential that these new possibilities should be widely understood and that there should be no room for suspicion that research is being carried out behind closed doors or that there is help available to which no one has access.

Among the London group, those concerned with the application of the new techniques to humans, a surprising number held the view that the benefit of the techniques lay in the matter of equality: everyone, whatever their disease or disability, would have a chance to benefit from the new therapies. But this would depend on the cost of genetic treatment, which might well be prohibitive for a cash-strapped NHS. Nearly everyone agreed that the new techniques should not be used frivolously, that is, they should be used for the treatment of serious diseases, especially heritable diseases, not for aesthetic reasons, such as the production of “designer babies”.

This moral imperative immediately introduces the idea that the use of genetic modification requires regulation and this is something that was acknowledged by almost all the participants in the survey, whether they were concerned with crops, animals or humans.

Wild rice is grown in a new greenhouse at the University of Arizona



Wild rice is grown in a greenhouse at the University of Arizona, where scientists have fully mapped and sequenced the genetic code of the rice plant. Photograph: Gary Williams/Getty Images

Many of those surveyed expressed the hope that such regulation should be global; however, that seems to me pure fantasy. Think of the difficulties in establishing global agreement on the management of pollution. In this case, we must simply try to regulate for ourselves and hope that, if we can get it right, others will follow.

There was one concern of the report with which I had little sympathy and that was the matter of consent. A number of people expressed anxiety that, if a child were genetically modified so that that child, and their children, would no longer suffer from an inherited disease, they would have had this done to them, as well as to future generations, without their consent.

Obviously that is true. And obviously in many cases it is desirable that consent be assured before action is taken that involves someone else. But if you are being rescued from an intolerable situation, surely your consent can be taken for granted. If, in order to prevent my being burned to death in a house fire you fling me over your shoulder and run – you don’t need to stop to ask my consent. So, if you can act so as to spare a child, and future generations of children, the sufferings of disability, surely you do not need their consent to take the necessary actions. Sometimes, I feel that people engaged in these discussions underestimate the awfulness of having a profoundly disabled child.

And this leads to my next point: there were those whose response to the inquiry was to suggest that it was wrong to try to find ways to remove or alleviate the sufferings of those who have genetically determined disabilities. To suggest that one might hope to eliminate disability was the same as to hope to eliminate disabled people. And this was discrimination.

But this argument, though I have frequently encountered it, often put forward with passion, seems to me very weak. To say of someone that his life would be better if he were not disabled is not the same as to say that it would be better if he did not exist. But, on the whole, there was little of this in the findings of the survey. It has been a useful and enlightening exercise.

Mary Warnock is a moral philosopher and life peer

Would-be parents moving house to get free IVF on NHS

Doctor at hospital with UK’s largest sperm bank says discriminatory funding system behind relocation

Reproductive scientist






A reproductive scientist checks embryos and sperm at the UK’s largest sperm bank at Saint Mary’s hospital in Manchester.
Photograph: Christopher Thomond for the Guardian

Many would-be parents are moving house in order to access free IVF on the NHS, sometimes saving themselves £10,000, according to the lead fertility doctor at the UK’s largest sperm bank.

Dr Raj Mathur, a consultant gynaecologist at Saint Mary’s hospital in Manchester, said he “constantly” saw patients moving house and/or GPs in order to get more free IVF cycles.

Mathur, whose clinic accepts NHS patients from 23 clinical commissioning groups (CCGs) across the north-west of England, said the geographical differences in funding were discriminatory.

“It’s a bloody nightmare, localism in the NHS. I’m all for centralisation. It’s a scandal because it should really be decided by the National Institute of Clinical Excellence [Nice] … They came up with national guidelines but everywhere in the country has its own version of those criteria,” he said.

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Nice recommends that women aged under 40 should be offered three cycles if they have been trying to conceive for two years. Cost-cutting CCGs are defying advice set out by the government and NHS advisers.

“Some CCGs will specify that both should be childless; others will specify that there should be no children in that relationship … In my clinic Mrs Manchester will get one cycle and Mrs Rochdale will get three,” Mathur said.

Some borders between Greater Manchester boroughs are so tight that patients can be one house away from qualifying for extra NHS fertility treatment. Some streets in Bolton, which offers one free IVF cycle, turn into Bury (three free cycles) across the road.

Mathur said people constantly move house to register with a GP in another CCG: “You set up a game and people will play the game.”

Greg Horne, a consultant embryologist at Saint Mary’s, agreed: “It’s like if you try to find a house in the catchment area of a particular school.”

The average market price for a single cycle of IVF in a private clinic is £3,348, research by Opinium found. With just one in three cycles resulting in pregnancy, many patients spend in excess of £10,000 on three attempts or more.

“It’s discriminatory. It’s a classic example of a postcode lottery, it goes against evidence-based guidelines,” said Mathur, who is also secretary of the British Fertility Society.

Provision is being reduced as a cost-cutting measure in some areas and has been cut altogether in others. Mathur’s patients in most parts of Cheshire used to have three IVF cycles funded but as of last April are offered one.

Saint Mary’s, which was the first hospital in the UK to offer an NHS IVF service, is home to the UK’s biggest sperm bank. Working in partnership with a private American company, Fairfax Cyrobank, sperm from 100 American donors is held in a depot in Manchester.

The sperm is frozen in liquid nitrogen and flown over in “dry shippers”, which look like metal milk churns. It is then inserted directly into a woman’s uterus via a small catheter through the cervix – a process known as Intrauterine Insemination, IUI, which has a one-in-10 success rate – or is used for IVF where a woman’s egg is fertilised in a laboratory and is then returned to her womb as an embryo.

Like most fertility clinics, Saint Mary’s has faced a severe shortage in donor sperm since a 2005 change in the law giving children the right to know the identity of their donor once they reach 18. Donors cannot be paid more than basic expenses and can contribute to a maximum of 10 families.

In recent years, the hospital had just three regular donors on its books, all of whom were white. This was a problem as 20-25% of the hospital’s fertility patients are British Asians.

In Sunni Islam, sperm donation is forbidden “… so they wouldn’t have told people it’s a donor child, so it’s very tricky. There’s a red-haired gene that pops up in the caucasian population of the UK, for example,” said Mathur.

In 30 years working at the clinic, Horne said he could recall just one Asian donor. Ten of Fairfax’s current US donors are of Asian heritage and all have accepted that their donor children may contact them in adulthood.

Faye Penny is the donor coordinator at Saint Mary’s, and sits down with each patient to look through Fairfax’s online catalogue. They can search by detailed criteria including physical characteristics, personality, baby photos and can even hear his voice. “Most straight couples don’t want to see the photos,” said Penny. “Often all they want to know is the hair and eye colour and the ethnicity.”

Donor 4848 is 175cm tall and 90kg and is of Indian origin. His favourite animal is a hamster, he is Muslim, likes going to the theatre and reading.

Donor 5319 is described as: “Shy at first, he is insightful with a warm heart and caring spirit. He loves spending time around children and seeing the potential of the world’s future first-hand … Our staff consider him attractive, with a handsome face and a tall, athletic build.”

Penny believes that being able to offer patients a choice of donor without making them wait is important. “Previously, you didn’t know the donor was going to be available the next time someone came in, because they can only make 10 families.”

According to the Human Fertilisation and Embryology Authority (Hefa), more than 300,000 children in the UK have been born from licensed fertility treatment since 1991. Of those, at least 15,000 were born at Saint Mary’s in Manchester.