Concerted regulation of human genome editing technologies and their applications is still needed, was the consensus at the Third International Summit on Human Genome Editing.
At the summit, held at the Francis Crick Institute in London last week, attendees discussed the science, ethics, regulation and applications of human genome editing.
'Governance mechanisms for human genome editing need to protect ongoing, legitimate research, while preventing clinics or individuals from offering unproven interventions in the guise of therapies or ways to avoid disease' concluded the summit's organising committee, adding: 'Heritable human genome editing remains unacceptable at this time.'
In response to Dr He Jiankui's announcement at the second summit in 2018, that he had created the world's first known people with edited genomes (see BioNews 977), one of the topics discussed was the regulation of genome editing in China – which has introduced new rules since the scandal.
'China has considerably tightened its legislation and regulations.... Permanent, inherited changes are banned, governance has adopted a precautionary approach and our laws are in line with international rules' said Dr Yangin Peng, from the Chinese Academy of Science.
Previous Chinese rules on genome editing arguably applied only to human subjects in hospitals, a loophole that was used by Dr He to edit the genomes of embryos that were subsequently used to establish pregnancies. The new regulations apply to all research institutes and all work relating to humans, but not necessarily to the private sector.
'My biggest concern is that the new measures fail to cover a chronic and increasing problem in trying to deal with private ventures that are taking place outside of conventional scientific institutes,' said Dr Joy Zhang from the University of Kent.
Having served a three-year prison sentence, Dr He has now set up a clinic to address Duchenne muscular dystrophy, a rare inherited disease. The clinic's work may not have to follow the new laws, as it is an independent nonprofit organisation.
Such variation in rules is not confined to China. In the USA, public funding cannot be used for any work involving human embryos, while privately funded research is free to make use of such embryos.
As well as discussing what rules should be in place, attendees at the Third International Summit also discussed how compliance should be monitored and enforced. '[The problem] is not the lack of guidelines or regulations on paper, but how to realise them in practice' Professor Jing-Bao Nie, a medical ethicist at the University of Otago, New Zealand told Science.
Sources and References
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Statement from the Organising Committee of the Third International Summit on Human Genome Editing
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China's new human gene editing rules worry experts
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Ethical concerns temper optimism about gene editing for human diseases
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In wake of gene-edited baby scandal, China sets new ethics rules for human studies
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Human genome editing offers tantalizing possibilities – but without clear guidelines, many ethical questions still remain
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Forthcoming genetic therapies raise serious ethical questions, experts warn
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Why CRISPR babies are still too risky — embryo studies highlight challenges
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