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China halts controversial 'genome-edited babies' research

3 December 2018
Appeared in BioNews 978

Authorities in China are moving to suspend the research activities of the scientists who claim to have modified the genomes of twin girls with CRISPR/Cas9.

This move came in response to the uproar that was sparked among the international scientific community when Dr He Jiankui, an associate professor at the Southern University of Science and Technology in Shenzhen, claimed in a YouTube video last week that he and his team had genome edited human embryos, resulting in the birth of the twins (see BioNews 977).

Dr He also raised the possibility of a third genome-edited baby when he presented his work publicly for the first time at a conference in Hong Kong last week. He said another woman in the study was in the early stage of pregnancy.

'The genetically edited infant incident reported by media blatantly violated China's relevant laws and regulations,' said Xu Nanping, China's vice minister for science and technology. 'It has also violated the ethical bottom line that the academic community adheres to. It is shocking and unacceptable.'

Some regulations banning the use of research embryos for reproduction in China do exist in a 2003 ethics guidance document. However, no punishments for violating those rules are clearly mentioned, which leaves the regulations somewhat vague, according to The Guardian.

Dr He is quoted as being 'proud' of his research, as the procedure sought to remove the CCR5 gene with the intended effect of making the girls HIV-resistant. But many have still condemned Dr He's research as highly unethical, as the safety of using CRISPR-Cas9 in humans has not been fully explored. Critics have also pointed out that there are already suitable means for preventing the transmission of HIV, arguing that such a procedure was unnecessary.

Additional concerns were raised in a statement published by organising committee of the Second International Summit on Human Genome Editing. 'The procedure was irresponsible and failed to conform with international norms,' said the committee.

'Its flaws include an inadequate medical indication, a poorly designed study protocol, a failure to meet ethical standards for protecting the welfare of research subjects, and a lack of transparency in the development, review, and conduct of the clinical procedures.'

However, the committee noted that germline genome editing 'could become acceptable in the future' if risks were properly addressed and the appropriate criteria met.

'These criteria include strict independent oversight, a compelling medical need, an absence of reasonable alternatives, a plan for long-term follow-up, and attention to societal effects,' it said.

The science and regulation of genome editing will be discussed at this coming Wednesday's Progress Educational Trust Annual Conference 'Make Do or Amend: Should We Update UK Fertility and Embryo Law?'.

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.

Chinese gene-editing defends his research, raising possibility of third baby
CNN |  29 November 2018
CRISPR-baby scientist fails to satisfy critics
Nature News |  28 November 2018
On Human Genome Editing II: Statement by the Organizing Committee of the Second International Summit on Human Genome Editing
The National Academies of Sciences Engineering Medicine |  29 November 2018
Research activities of persons halted over gene-edited babies incident
Xinhua |  29 November 2018
Work on gene-edited babies blatant violation of the law, says China
The Guardian |  29 November 2018
9 December 2019 - by Jakki Magowan 
The MIT Technology Review has released excerpts of unpublished research from Dr He Jiankui's manuscript that ignored ethical and scientific norms when creating the world's first gene-edited twins...
22 July 2019 - by Georgia Everett 
A resolution to encourage international cooperation in regulating human genome editing has been introduced in the US Senate...
17 June 2019 - by Dr Helen Robertson 
A Russian scientist has announced his intention to produce genome-edited babies...
10 June 2019 - by Shaoni Bhattacharya 
The gene mutation that Dr He Jiankui aimed to emulate in the world's first genome-edited babies, has been linked to increased deaths in later life...
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...
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...
13 August 2018 - by Dr Alexander Ware 
Controversy surrounding last year's report of a disease-gene being edited out of human embryos continues with a fresh round of evidence...
2 October 2017 - by Dr Rachel Montgomery 
A genome editing technique called 'base editing' has been used to correct the mutation causing the inherited blood disorder beta-thalassemia in human embryos...
4 September 2017 - by Annabel Slater 
A group of scientists have challenged the landmark study which reported the first successful editing of human embryos for a genetic disease...
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