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WHO calls for global human genome editing research registry

25 March 2019
Appeared in BioNews 992

An advisory committee to the World Health Organization (WHO) has called for a global registry to track all research involving human genome editing, during its first meeting in Geneva. 

The main aim for the registry is to 'increase accountability of scientific researchers around the world', said Dr Margaret Hamburg, the committee's co-chair and foreign secretary of the US National Academy of Medicine. Scientific journals and genetic research funders would be required to register any publications or funding relating to human genome editing, to increase transparency in this field of research.

The committee was formed last month (see BioNews 987) after the recent controversy in China, where scientist Dr He Jiankui created the world's first genome edited babies using the CRISPR/Cas9 approach to genome-editing (see BioNews 977). At the WHO committee meeting, the committee also advised that any germline genome editing – which creates changes to the DNA that can be passed on to the next generation – should be for research purposes only.

'The committee agrees it is irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing,' said Dr Hamburg.

However, she said the committee was not calling for a permanent moratorium on such research. 'We are trying to look at the broader picture and a framework for responsible stewardship,' said Dr Hamburg. 'I don't think a vague moratorium is the answer.'

Last week, an international group of researchers called for a temporary moratorium on clinical use of human germline genome editing (see BioNews 991). 

In the next two years, the committee plans to provide recommendations for a framework that is 'scalable, sustainable and appropriate' for governing human genome editing research from local to international levels. 

'Technologies are just moving so fast, so we think it's really very important for us to engage with the scientific community,' said Dr Vasee Moorthy, a scientific adviser to the WHO. 'Really, the long-term vision is to accelerate the benefits for people around the world while reducing risk.'

Dr Helen O'Neill, a molecular geneticist at University College London, was in favour of the WHO committee's approach. 'Speaking to researchers about their research and being very open is the best way forward, to open it to discussion rather than polarising the debate,' she told Nature

Dr O'Neill also said she would like the WHO committee to take its time developing global recommendations and not rush into producing a framework. In the meantime, she said,  the negative reaction to Dr He's work among scientists and in the media 'should deter any other rogue scientists from undertaking similar experiments before the governance question is settled'.

WHO expert panel paves way for strong international governance on human genome editing
World Health Organization |  19 March 2019
W.H.O. Panel Demands a Registry for Human Gene Editing
New York Times |  19 March 2019
World Health Organization panel weighs in on CRISPR-babies debate
Nature News |  19 March 2019
22 July 2019 - by Georgia Everett 
A resolution to encourage international cooperation in regulating human genome editing has been introduced in the US Senate...
8 July 2019 - by Shaoni Bhattacharya 
A Russian scientist who announced his intention to create genome-edited babies last month, has now revealed details of his plan...
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...
4 March 2019 - by Hugo Wolfe 
The Chinese government has announced new regulations on genomic technologies in response to a Chinese scientist's claim to have created genome edited babies...
18 February 2019 - by Dr Sam Sherratt 
The World Health Organization is convening an 18-member committee of scientific experts from around the globe next month with the goal of developing international standards for the oversight of human genome editing...
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