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Genome editing in humans could become both ethical and prudent if properly regulated

3 December 2018
Appeared in BioNews 978

The announcement that Chinese scientists genetically edited two embryos resulting in genome-edited human babies has occasioned outrage (see BioNews 977).

My first reaction is that this action (if true) is both premature and reckless. There seems no adequate therapeutic reason to embark on human genome editing in the circumstances of this case. The two embryos were at no imminent risk of exposure to HIV and there are many other preventive strategies available. To use a highly experimental procedure in these circumstances seems without justification.

I support the UK policy that any modifications affecting the genome of an implanted human embryo must be licensed by the regulatory body, the Human Fertilisation and Embryology Authority (HFEA) which was established by Act of Parliament in 1990. To permit such embryos to be implanted would also need approval by the UK Parliament, as has recently happened in the case of mitochondrial donation. In circumstances such as the Chinese case, as reported, it is unimaginable that such a procedure would or should be approved by the HFEA or Parliament.

In the UK we have, since 1990, had (so far) adequate and robust safeguards in place. These resulted from years of wide public consultation, scholarly research and authoritative reports, resulting in a broad consensus, established and continually reviewed by Parliament. Any other nation contemplating moves in this field needs to have appropriate regulatory bodies in place and systems of continuing oversight.

Below I set out briefly some of my own views on the ethics that might support a well-regulated approach, as described above.

The first International Summit on Human Genome Editing took place in Washington, DC, in December 2015. I was an invited speaker at that summit.

A major question for those attending was whether editing the genomes of human embryos for therapeutic reasons should be on the table for discussion and approval on a case-by-case basis, or categorically ruled out.

All of us need genome editing to be pursued and, if possible, made safe enough to use in humans. Not only to pave the way for effective procedures on adult tissues, but more importantly to keep open the possibility of using genome editing to protect embryos from susceptibility to major diseases and prevent other debilitating genetic conditions from being passed on through them to future generations.

Objections to editing the genomes of human embryos centre on three fallacious arguments:

  1. Genome editing is wrong because it affects future generations, the argument being that the human germline is sacred and inviolable.

  2. Genome editing constitutes an unacceptable risk to future generations.

  3. The inability to obtain the consent of those future generations means we must not use genome editing.

We should be clear that there is no precautionary approach; just as justice delayed is justice denied, so therapy delayed is therapy denied.

Many objections to germline interventions emphasise that such interventions are objectionable in that they affect 'generations down the line'. But this is true, not only of all assisted reproductive technologies, but of all reproduction of any kind.

Every year an estimated 7.9 million children – 6 percent of total births worldwide – are born with a serious birth defect of genetic or partially genetic origin. If the appropriate gold standard for permissible risk of harm to future generations is sexual reproduction, other germline-changing techniques would need to demonstrate severe foreseeable dangers to fail.

Indeed, if sex had been invented as a reproductive technology instead of appearing as part of our evolved biology, it would never have obtained a licence from the HFEA (or any other regulator) – far too dangerous and far too inefficient!

In his statement on genome-editing in human embryos Dr Francis Collins, director of the US National Institutes of Health, stated: 'The strong arguments against engaging in this activity remain... These include the serious and unquantifiable safety issues, ethical issues presented by altering the germline in a way that affects the next generation without their consent.'

Serious and unquantifiable safety issues feature in all new technologies, but consent is simply irrelevant for the simple and sufficient reason that there are no relevant people in existence capable of either giving or withholding consent to these sorts of changes in their own germline.

We all have to make decisions for future people without considering their inevitably absent consent. All would-be or might-be parents take numerous decisions about issues that might affect their future children. They do this all the time without thinking about consent of the children.

George Bernard Shaw and Isadora Duncan were possibly apocryphal exceptions. When she, apparently, said to him something like: 'Why don't we have a child? With my looks and your brains it cannot fail', she received Shaw's more rational assessment: 'Yes, but what if it has my looks and your brains?'

If there is a discernible duty here it is surely to create the best possible child. That is what it is to act for the best, all things considered. This we have moral reasons to do; but they are not necessarily overriding reasons.

The late Professor Stephen Hawking initially predicted that we might have about 7.6 billion years to go before the Earth gives up on us. Towards the end of his life he revised his position in relation to the Earth's continuing habitability as opposed to its physical survival. 'We must also continue to go into space for the future of humanity,' he said. 'I don't think we will survive another thousand years without escaping beyond our fragile planet.'

We know for sure that in the future there will be no more planet Earth: our sun will die, and with it all possibility of life on this planet. To survive, we will have to escape both beyond our fragile planet and our fragile nature.

As I say in my recent book How To Be Good:

'By the time this happens, we may hope that our better evolved successors will have developed the science and the technology needed to survive and to enable us (them) to find and colonise another planet or perhaps even to build another planet; and in the meanwhile to cope better with the problems presented by living on this planet.'

One way to enhance our capacity to do these things is by improving on human nature where we can do so in ways that are 'safe enough'. What we all have an inescapable moral duty to do is to continue with scientific investigation of genome editing techniques to the point at which we can make a rational choice. We must certainly not stop now.

We should certainly not rule out human genome editing if it can be made 'safe enough' for human use. This seems highly probable, but we are definitely not there yet.

Professor John Harris is speaking in the final session - 'The Future of Fertility Law: What Must Change and When?' - 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.

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...
11 February 2019 - by James Close 
The first in vivo genome editing therapy has been successful in editing patients' DNA, but has not shown a clinical benefit...
7 January 2019 - by Rachel Siden 
Chinese scientists have allegedly lost track of patients who participated in a trial of a gene therapy for cancer...
26 November 2018 - by Shaoni Bhattacharya 
The first births from genome-edited human embryos have been announced by a Chinese researcher amid widespread condemnation, and fears over safety...
26 November 2018 - by Dr Dusko Ilic 
Back in 18th century, British physician Dr Edward Jenner tested his hypothesis that harmless cowpox can prevent deadly smallpox disease on a young boy in exchange for a few coins to his poor parents. In 2018, a Chinese researcher Dr He Jiankui tested genome editing on human embryos in exchange for free IVF treatment. But that's where the parallels end...
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