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expert reaction to the publication of new report on genome editing

The National Academies of Sciences (NAS) and National Academy of Medicine (NAM) have published a new report, Human Genome Editing: Science, Ethics, and Governance. 

 

Robert Meadowcroft, CEO of Muscular Dystrophy UK, says:

“The rapid development of powerful and precise tools, such as gene editing, offers the genuine prospect that many families affected by painful, life-limiting conditions like muscular dystrophy will have a treatment choice in the future.

“The possibilities of germline genome editing are potentially life-changing and today’s news will give many families in the UK new hope. However, we must remember that the science is still in its infancy, there are some important questions to be addressed and we will not see results in the immediate future.

“We understand that some people may have a concern that this technique could lead to ‘designer babies’, but we have confidence in the UK’s strong regulatory and ethical system to deliver the necessary framework to safeguard against this.”

 

Prof. Darren Griffin, Professor of Genetics, University of Kent, said:

“Steady as she goes”, but the news to allow genome editing of embryos, under strict conditions, is to be welcomed.  As with all radical step changes, particularly ones and ethically charged as these, caution is the key.  The list of conditions under which this could and should go ahead appears sensible and the willingness to engage with the public through a transparent process is refreshing. For such novel innovations there are no easy answers and the benefits need to be weighed against the risks.”

 

Mr Alastair Kent, Director, Genetic Alliance UK, said: 

The Committee has recognised the enormous positive potential that genome editing holds for human health, whether as a research tool or a treatment technique. Genome editing of the germline is one aspect of possible treatment uses and it is right that this potential is explored within a regulatory framework and with appropriate oversight.

“Carers, parents and patients affected by genetic conditions support the exploration of all potentially fruitful avenues of research to address unmet health need, and like the committee, they have been clear that the focus of research and investment should be on improving human health, not on human enhancement.

“We welcome the courage and foresight of the National Academy of Sciences to support work in this ground breaking and innovative area of biomedical research and development.”

 

Dr Sarah Chan, Chancellor’s Fellow at Usher Institute for Population Health Sciences and Informatics, University of Edinburgh, said:

“It is encouraging that the NAS/NAM report considers heritable human genome editing as “a realistic possibility” rather than ruling it out altogether. Genome editing technology holds tremendous potential benefits but the concerns around so-called ‘germline genome editing’ must be taken into consideration; the report, in acknowledging the prospects for developing this technology, paves the way for these discussions to continue. A cautious but reasoned approach with ample time and scope for public participation and discourse, together with careful consideration of social and ethical dimensions, is exactly what is needed.”

 

Prof. Peter Braude, Emeritus Professor of Obstetrics and Gynaecology, King’s College London, said:

“This specific and detailed examination of the implications and risks of the use of Gene Editing tools in humans should be welcomed as a significant start to further international discussion and deliberation.

“The report’s key principles to be considered as part of oversight:  Promoting well-being, transparency, due care, responsible science, respect for persons, fairness, and transnational cooperation are appropriate and laudable, but it is perhaps the last that is likely to be the most difficult to implement, especially when it comes to the contentious areas of germline [heritable] genome editing even for serious genetic disease, and the potential for use in genetic enhancement.

“Oversight and regulation are always difficult in assisted reproductive technologies (ART). In the UK the Human Fertilisation and Embryology Act provides strict legal regulation not present in many other countries. In the USA regulation only exists in some states, and at federal level only by restricting of funds – no longer a problem for most ART clinics, which operate in the private sector. Transnational agreement is more difficult to achieve where cultural norms and acceptable practice may differ and where oversight is less strict and enforceable. We have only to look at recent progress on mitochondrial donation; whilst regulated strictly in the UK for the specific purpose of avoiding mitochondrial genetic disease, it has been extended to use for infertility in some countries where oversight is less regulated, despite there being few data to support its use for that purpose. Carefully weighed risks for its application in mitochondrial genetic disease seem to have been ignored.”

 

Katherine Littler, Senior Policy Advisor at Wellcome, said:

“The principle-led approach to human genome editing outlined by the NAS is the right one. We must now develop the right language and methods that work for sparking public debate and discussion. As the science moves forward, the onus is on all of us to be transparent and to involve the public in the decision-making process.”

 

Prof. Bruce Whitelaw, Interim Director of the Roslin Institute, and Professor of Animal Biotechnology, University of Edinburgh, said:

“This report reflects the international effort to establish the appropriate stewardship for use of genome editing technology in advance of its application. This progressive action is to be applauded in light of the far reaching potential of this revolutionary technology.

“The widespread use of genome editing in research has already enabled significant advances in our understanding of biology, and is set to continue to do so. This includes editing the germ line of animals for basic research and for applications in agriculture and biomedicine. In parallel, there are already trials evaluating how this technology can advance somatic gene therapy treatment of disease in humans. The latter results in the edited DNA being present in an individual but as not in their germ cells it is not possible to pass the edited DNA onto their offspring. Society has existing expectations, standards and an established regulatory process for applications of human genome editing.

“The NAS/NAM report on Human Gene Editing: Scientific, Medical, and Ethical Considerations now takes this debate an important step further. It focusses on the genome editing of the human germ line which would result in an heritable change to an individual’s genome. The report concludes that this application of genome editing technology “could one day be permitted for serious conditions”. This bold statement looks to the future. It is a triumph of applying caution – with the report detailing stringent, overarching principles that should be followed – over premature prohibition of what is an exciting technology for society. This stance now needs the scrutiny that diverse public debate offers.”

 

Hugh Whittall, Director of the UK’s Nuffield Council on Bioethics, said:

“We welcome this report on genome editing in humans from the US National Academy of Sciences and the National Academy of Medicine. Whilst genome editing takes place in a global context which we must recognise, the governance arrangements differ from country to country. The US report foresees the use of inheritable genome editing under certain conditions. In the UK such use is clearly prohibited by existing law and any move to alter this would be long and controversial, with moral arguments for and against. This is why the Council is looking carefully now at its implications and potential applications, listening to all views and perspectives, before we consider our advice on whether or how to proceed. The Council published a review of the ethics of genome editing research last year and identified priority areas for more detailed work, including issues relating to human reproduction. Our report on this will be published later this year, so we welcome this important contribution from the NAS and NAM and look forward to reviewing it in detail. We will also soon begin work on looking at genome editing in the context of farmed animals.”

 

Sarah Norcross, Director of the Progress Educational Trust, said: “In their thoroughgoing report, the National Academies have come up with a very useful set of principles to inform the way we might approach genome editing in different parts of the world. The report’s recommendations concerning different applications of this technology – in basic research as well as in the clinic – are sensible and prudent, and place a welcome emphasis on public engagement. “Progress Educational Trust is a charity which works to improve choices for people affected by genetic conditions and infertility.”

 

 

* ‘Human Genome Editing: Science, Ethics and Governance will be published by the National Academy of Sciences (NAS) and National Academy of Medicine (NAM) on Tuesday 14th February.

 

 

Declared interests

Dr Sarah Chan: “My research includes work on the ethical and regulatory aspects of gene editing technology and I am a member of the Hinxton Group. I do not believe either of these create a conflict of interest.”

Prof. Peter Braude: “Was a member of the HFEA expert panel considering the scientific methods to avoid mitochondrial disease, and formerly director of the Centre for Preimplantation Genetic Diagnosis at Guy’s Hospital.”

Katherine Littler: “Wellcome was one of the sponsors of the report.”

Prof. Bruce Whitelaw:  “ My research does not involve human patients nor human tissue samples; I am on the Scientific Advisory Board of Recombinetics Inc, a biotech company focussing on application of genome editing technology in animals; I am a Director of Edinburgh Research and Innovation, a wholly owned subsidiary of the University of Edinburgh.

None others received.

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