Page URL: https://www.bionews.org.uk/page_143055

Commission on heritable genome editing launches, while China clamps down

3 June 2019
Appeared in BioNews 1000

An international commission has been assembled to provide guidance on the development of therapies using human germline genome editing.

The commission is a collaboration between the US National Academy of Medicine (NAM), the US National Academy of Sciences, and the UK's Royal Society, and aims to develop a precedent-setting framework for assessing the development of clinical uses of this emerging technology. The need for such a framework was highlighted by Dr He Jiankui's November 2018 announcement at the Second International Summit on Human Genome Editing in Hong Kong that twin girls had been born from genome-edited embryos (see BioNews 977). 

'These revelations at the summit in Hong Kong underscore the urgent need for an internationally accepted framework to help scientists, medical experts, and regulators address the complex scientific and medical issues surrounding clinical use of germline genome editing,' said co-chairs of the commission's international oversight board, NAM President Victor J Dzau and Royal Society Vice-President John Skehel.  

The framework will consider ethical, medical and social factors, and aims to develop a pathway to responsibly derive clinical benefit from the technology. The commission plans to deliver a report in 2020 detailing protocols to evaluate off-target effects and side effects of germline editing, appropriate consents for patients and an evaluation of the balance of benefits and harms to future children.

The co-chairs also welcomed the formation of the recently announced World Health Organisation's Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing (see BioNews 987)

Dr He's research was strongly condemned by the scientific community for breaching ethical norms. Genome-editing has been included as a last-minute addition to China's new draft civil code to dissuade other scientists from pursuing similar lines of research unregulated. Experiments on human genes or embryos will be regulated under the part of the code which upholds rights to dignity and physical wellbeing, meaning that dangerous or unethical research on human embryonic or adult genomes could constitute a fundamental rights violation. It is the first time that any regulation relating to the genome has been included in the code.

SOURCES & REFERENCES
China set to introduce gene-editing regulation following CRISPR-baby furore
Nature News |  20 May 2019
New International Commission Launched on Clinical Use of Heritable Human Genome Editing
The National Academies |  22 May 2019
RELATED ARTICLES FROM THE BIONEWS ARCHIVE
25 November 2019 - by Julianna Photopoulos 
Genome-edited babies may be ethically justifiable, highly desirable and less than two years away according to a bioethicist at Abertay University in Dundee...
19 August 2019 - by Helen Robertson 
The international commission on the Clinical Use of Human Germline Genome Editing met for the first time last week to discuss the governance and use of embryo genome editing...
22 July 2019 - by Georgia Everett 
A resolution to encourage international cooperation in regulating human genome editing has been introduced in the US Senate...
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...
20 May 2019 - by 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...
25 March 2019 - by Julianna Photopoulos 
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...
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...
3 December 2018 - by Dr Andy Greenfield 
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.
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...
HAVE YOUR SAY
Log in to add a Comment.

By posting a comment you agree to abide by the BioNews terms and conditions


Syndicate this story - click here to enquire about using this story.