Professor Doug Turnbull leads a team of scientists in Newcastle making world-leading advances. Graeme Whitfield talks to him about patients, politics and why the North East is a great place to do research.
Doug Turnbull is recalling the moment when MPs voted on whether to allow the medical advancements to which he has devoted much of his working life.
The Newcastle University professor was in the House of Commons to hear the debate on mitochondrial donation, a gene therapy technique that could prevent horrific and often fatal conditions being handed down from mother to child.
The debate around the ethics of that technique had seen Newcastle scientists at the top of the national news agenda for a few weeks.
But an hour-and-a-half of debate – some of it impassioned, some of it frustratingly ill-informed – had left Prof Turnbull and those with him with no inkling of how the vote would go.
“I was in the public gallery at the House of Commons,” he says. “It was very stressful but what was fantastic for me was that I was actually with a lot of patients and some of the staff from here who have been very much involved in what we’d been doing.
“It was almost impossible to know which way it was going to go because they have some speakers who are for and some who are against. When the MPs go out to vote you can’t see who’s going through which lobby, so you just don’t know.
“Then the tellers came back and they read out 382 for and 128 against. If you look at the footage, which you can still see on the web, when they read that out, there’s a whoop of joy from the public gallery, which was the patients and their supporters.
“Then you see all the MPs look up to the public gallery. It was one of those moments where there was just a spontaneous outpouring of joy that this had got through.”
The vote brought to a head 15 years of work led by Prof Turnbull and his team at Newcastle University.
Much of his professional career has been based on diseases affecting the mitochondria of human cells, often referred to as the “human battery pack” because they generate much of the energy cells use to work.
Though each single condition is not common, there are a range of mitochondrial diseases which, in total, affect roughly one in every 5,000 of the population. The effects of the condition vary hugely, with some patients dying within days of birth and others living full lives.
The diseases in question are cruel in two ways. Firstly, there is no cure and, secondly, the diseases are passed down from parent to their children, meaning people often face an agonising dilemma over whether to have children when their offspring are likely to inherit serious illnesses.
With both of those factors in mind, Prof Turnbull’s team have been working on how to prevent the diseases happening in the first place and have developed a technique which involves the replacement of unhealthy mitochondria in a woman who carries a disease with healthy material from a donor woman during the process of IVF.
The resulting baby would have all the gentic traits of its parents but for the fact that that it has healthy mitochondria, so would be free of disease.
Yet the technique has sparked much opposition, much of it sparked by ethical and religious objections to interference in human genetic material. The technique became popularly known as “three person babies”, though the fact is that children born using the technique would have only a tiny percentage of genetic material from the donor mother.
Such objections meant the Newcastle University research has had to overcome repeated regulatory hurdles, mostly with the Human Embryology and Fertilisation Authority and then at the parliamentary level (where the Commons’ approval was matched in the House of Lords a few weeks later).
“This is a very complex subject but some of the comments were very ill informed,” Prof Turnbull said. “It was a frustration. I think there was a feeling that people were raising up safety concerns while their predominant concern was ethical. The minister, Jane Ellison, said that in the select committee, that’s on public record, and I agree with her.
“The process that we’ve been through has been rigorous and it absolutely should have been. This is important development and it should be rigorously looked at.”
Prof Turnbull, who grew up in Whitley Bay and trained at Newcastle University’s medical school (“the furthest I’ve been away is Carlisle,” he says), has been looking after mitochondrial patients since the 1980s.
But it was the experience of seeing a mother from Sunderland who had lost seven of her children to mitochondrial disease that spurred his interest in finding a way to stop the conditions being passed from mothers to their children.
“Developing the idea of mitochondrial donation was very much based upon people like seeing this lady in the clinic, realising that cures for these conditions were a long way off and we’d better start trying to prevent them,” he said.
“That’s where it all started from. It was something people had thought about but hadn’t really taken to the level of actually thinking seriously about preventing mitochondrial disease.”
Initial research around the technique in 2000 led to work in Parliament to change regulations in the Human Fertilisation and Embryology Act (with help in Parliament from Lord Walton, the former head of Newcastle University’s medical school, himself an eminent medical pioneer in his time, who worked with Prof Turnbull early in his career).
Public consultations on the changes followed, and scientific reviews. The Government backed what was being proposed which led to more consultation and more reviews, before the proposals went to Parliament in February.
Even now Prof Turnbull’s team are waiting on the Human Fertilisation and Embryology Authority to draw up terms of a licence before they can actually do the work they have been developing. Nothing will happen before October, but if all goes well, the technique could be in use by the end of this year or early next.
“It has been a very long time,” says Prof Turnbull. “Some of the critics said it’s been rushed and I can say it certainly hasn’t been rushed!
“At each stage of the process this has been very carefully considered, and it’s right that it has been. There’s not many countries that do what we do. It’s admirable for the UK that we’ve done that.”
That lengthy period has been a more than significant journey for Prof Turnbull too. Initially reluctant to engage with the press or do much of a public relations job for his work, he eventually became the frontman for the research, appearing on TV and in national newspapers to press the case for what his team are doing.
Even now he appears singularly unenthusiastic about being a public figure, consistenly stressing the “team” that has brought the work to where it is, stopping often in mid-flow to highlight his own staff, the IVF unit run by professors Alison Murdoch and Mary Herbert at Newcastle’s Centre for Life and the city’s NHS hospitals trust.
At 61, he knows he will not be the person to take much of his work forward, but seems profoundly unbothered.
“Sometimes there’s a tendency to say this person’s done this or that, but this wouldn’t work without a team, it just simply wouldn’t,” he says. “I work with really good people who will be really good at taking this forward.”
He is, however, proud – though it takes him some effort to say the word – that the team he heads is making a real difference to patients’ lives and put world-leading science being done in the North East at the forefront of national attention.
“I love the North East of England,” he says. “There’s a collective will to help and I think that’s why it’s a good place to do research and we should be proud of our region.
“I don’t think people always appreciate what a treasure the medical school is. We should really treasure the university but also its relationship with the hospital trust because if, as a researcher, you’re actually going to improve people’s health you’ve got to have good links between the two.”