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I remember where I was when I heard about the world's first genome-edited babies

3 December 2018
By Dr Andy Greenfield
Andy Greenfield is a programme leader at the MRC Harwell Institute.
Appeared in BioNews 978

I remember where I was when I first heard about the deaths of Elvis and John Lennon, and about the planes that flew into the Twin Towers. Now, I can add to that list where I was when the news broke of the birth of two genome-edited babies.

I was in the underground car park at Hong Kong airport. I had flown in to attend the Second International Symposium on Genome Editing. I was about to get into the hotel shuttle bus when another conference attendee said, 'Did you hear the news?' I was puzzled – she didn't know me, so this must be big news. I looked puzzled, too, apparently. 'The first genome-edited humans,' she said. This didn't help, since there have now been numerous reports of genome-edited human embryos. 'Actual genome-edited babies,' she said, sensing my confusion.

The penny dropped. Someone had created genome-edited human embryos, using a form of IVF, and transferred them to a woman to establish a pregnancy, who had then given birth to twins. 'Mad bastards,' was my first thought. Such a procedure would be illegal in the UK and pretty much everywhere else, or so I thought, but this had taken place in China. I sat in the shuttle bus, as we all did, deep in thought.

I had been invited to the conference to speak in a session entitled 'Genome editing: research ethics'. This invitation presupposed that I know something about both research and ethics. I'd like to think that's true: I have been a developmental geneticist for over 25 years, generously funded by the Medical Research Council. I have also been a member of the Human Fertilisation and Embryology Authority (HFEA), the UK regulator of treatments and research involving human embryos, for nearly ten years. I've also been a member of the Nuffield Council on Bioethics, a world-renowned ethics think tank, for nearly five years. Surely I know something about this stuff.

Nevertheless, I had been a little anxious about this talk. This field is what social scientists call 'contested' and what journalists call 'controversial'. Anyone who knows me would know that 'sticking to the script' is not really one of my strengths. I would rather be silent than adhere strictly to some predetermined list of points. This has been my making and my failing. But I do not like headlines, and so I was keen not to say anything that might make one, given the interest in this topic, and this symposium, all over the world. I want to promote the use of genome editing in research, to shed light on the causes of human diseases. I want to promote scientific and ethical debate and discussion on this sensitive topic, including the use of genome editing in assisted reproduction. That was my message: keep talking. I wanted to say it and leave without any fuss.

My anxiety was exposed as a mere vanity by the announcement of the birth of these two Chinese girls. What could I possibly say that mattered now? In the session in which Dr He Jiankui, who claims to have performed the procedure, gave his talk, there was an electricity in the auditorium unlike anything I have experienced in my scientific career. In contrast to the other speakers who had stepped up to the podium from the floor of the auditorium, Dr He appeared like an actor from the side of the stage, somewhat late, to muted applause. There was a cacophony of sound from clicking cameras in the press gallery. This was a stage, and this was theatre.

My colleague, Professor Robin Lovell-Badge, chaired the session admirably. He urged the journalists and the audience to remain calm, not to interrupt proceedings and to allow Dr He to be heard. If they did not oblige, he warned, he would bring the session to an end. The talk passed without incident. Dr He was then questioned by Professor Lovell-Badge and colleagues. Questions from journalists were also put to him, something I have never witnessed at a scientific meeting. Dr He's demeanour, it seemed to me, was calm and his body language suggested a degree of contrition.

But I sensed so many apparent contradictions. He did not once admit any wrongdoing; he carefully explained what he had done and why. His aim had been to generate humans with an altered version of a particular protein, CCR5, which if disrupted would confer immunity to HIV infection. He had, he believed, followed appropriate protocols in obtaining informed consent from the parents. He had also sought and was given appropriate institutional authority to proceed – but neither of these statements convinced many in the audience. Had he acted 'off-licence'? The father of the babies was HIV-positive, but the children were not at risk of infection from him. There are many methods to avoid infection that fall far short of genome editing.

Dr He's quietly spoken manner suggested modesty and humility; but was he not driven by an egotistical desire to be the first to generate a genetically altered human being? Many questions remain. One important point: given the momentous nature of the announcement, it will be important to independently verify the data that Dr He presented, whilst protecting the identity of the children. As yet, the data have not appeared in a peer-reviewed journal.

I spoke in the afternoon session, but I sensed much energy had been sucked from the hall by the earlier events. Almost everybody referenced Dr He. While there was general condemnation, many were wary of expressing thoughts so soon. A considered response will take time.

As I write this, in a restaurant overlooking the Hong Kong skyline, I am also wary of definitive pronouncements. Many of us thought that, if clinicians were to use genome editing technology to generate a live birth, it would probably be to prevent transmission of an inheritable disease, such as cystic fibrosis or Huntington's disease. But most of us also think that it is too soon to proceed with such treatment in the IVF clinic, because there are still too many unknowns concerning the technology and human embryonic development.

These are only the scientific concerns. What about the ethical considerations? There are already treatments that will prevent disease transmission in most cases, such as preimplantation genetic diagnosis. This technology is not without its problems and issues but it is at least tried and tested. Genome editing of embryos is still something of a leap in the dark, despite rapid progress. The justification for using it would have to be a good one, or so I thought.

Creating 'genomic immunity' to HIV infection does not seem to me to be such a justification. After all, this is more akin to a public health consideration than an example of personalised medicine. Are we to believe that genome editing during IVF should now be routine in any part of the world where there is a risk of infection? In other words, everywhere? Brave New World, anyone?

And yet, as many pointed out, there is a particular stigma attached to being HIV-positive in China. This was a first-in-human reproductive use of an emerging biotechnology in a particular social context – one that might be driven by a vision of future demand, of imagined financial incentives and, of course, by professional ambition. But that combination is not a happy one for someone, like me, interested in promoting responsible scientific innovation in the IVF clinic for the benefit of patients.

We may at some point, as a society, choose to use genome editing to eliminate or reduce the risk of children being born with a range of debilitating, life-threatening diseases. This prospect may seem unsettling now, but remember that the first use of IVF in the late 1970s was met with a similar response. IVF is now commonplace and unremarkable, regulated strictly by the HFEA in the UK.

As a species, we move on and adapt. In a sense, little has changed. I will still make the case for high quality research using human embryos, because there is so much to be learned from it that is of profound importance for the future of medicine. I will still promote introduction of new techniques of proven safety and efficacy into the IVF clinic, in the name of improved success rates. I will still urge a 'big conversation' in our society and globally, so that as many voices can be heard on this challenging topic.

It would be unfortunate if we were to be knocked off course by Dr He, railroaded into a rushed response to his experiment. That would be to lose sight of the promise of genome editing, of the importance of moving forward using small steps, and to honour something that I do not think deserves too much honour and respect. But, still, I will never forget where I was when I heard about the birth of the first genome-edited babies.

Dr Andy Greenfield is speaking in the third session - 'Science Marches On: Key Scientific Developments' - at this coming Wednesday's Progress Educational Trust Annual Conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?', where topics discussed will include the science and regulation of genome editing.

The conference is taking place in London on Wednesday 5 December 2018. There are still a handful of places available at the conference, but these are going fast. See the agenda and book your tickets now, by clicking here.

3 June 2019 - by Georgia Everett 
An international commission has been assembled to provide guidance on the development of therapies using human germline genome editing...
20 May 2019 - by Dr Helen Robertson 
The German Ethics Council has stated that intervention in the human germline - that is, DNA inherited by children from their parents - 'is not inviolable' when it comes to potential interventions...
15 April 2019 - by Jen Willows 
Genome editing was the subject up for discussion at the Progress Educational Trust's 'Germline in the Sand' event, held at the Royal College of Physicians of Edinburgh on 19 March 2019. The discussion, which was supported by the Scottish Government sought to explore the scientific and ethical boundaries of genome editing, and what place this technology should have within our society...
18 March 2019 - by Jakki Magowan 
A group of international experts is calling for a moratorium on the clinical use of germline genome editing in humans...
14 January 2019 - by Julianna Photopoulos 
Chinese scientist Dr He Jiankui, who claimed to have created the world's first genome-edited babies is said to be alive and well, and under guard at home...
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