It is "urgent" to create a transparent global register of all experiences related to human genome editing, a panel of experts convened today to advise the World Health Organization (WHO). The International Committee of 18 Researchers and Bioethicists, which met for the past two days in Geneva, Switzerland, also agreed with the general consensus that it would be "irresponsible for the moment that anyone who pursues clinical applications of the modification of the human genome ". "
However, the committee did not approve of the call for a "moratorium" on the modification of the human germ line launched last week by a group of leading researchers in a Nature comment. "I do not think that a moratorium is the solution to what needs to be done," said Margaret Hamburg, co-chair of the WHO committee, which previously headed the US Food and Drug Administration. and is now collaborating with the US National Academy of Medicine in Washington, DC, during a media teleconference today. Several highly publicized statements and reports on genome editing have also avoided using the word "moratorium," although they have also pointed out that too many risks and strangers still surround this technology to be used for germ line changes, which could alter sperm, eggs, etc. or embryos in a way that could transmit changes to future generations – even if the modifications are intended to prevent life-threatening diseases.
The committee met following the startling November 2018 news that a researcher in China, He Jiankui, had used the CRISPR genome editor on the embryos of twins that were born later. His colleagues and he say they have tried to paralyze a gene in girls to make their cells resistant to HIV infection. Researchers around the world have criticized the work for not being transparent, for not responding to an unmet medical need, and for not properly informing participants of the risk assessment. The Chinese government has condemned his work. He was fired from his university in Shenzhen, China, and an official investigation is under way.
Hamburg pointed out that the committee had a "broader accusation" than simply declaring a moratorium and that it was planning, over the next 18 months, to "dive deep" into the definition of global standards and the creation of 39, a "strong international governance framework" for "responsible management" of powerful technology.
Hamburg gave little details about the proposed registry, especially about who would operate it, but said it should include both germline experiments and less ethical studies, which modify the human genome non-hereditarily. A dozen less controversial experiments of this type, which modify so-called somatic cells and not reproductive cells with CRISPR and other genome editors, are in progress and are now listed in registries such as ClinicalTrials. gov, managed by the US National Library of Medicine. Hamburg explained that the committee would like scientific publishers and research funders to require submissions of records for the work that they accept or support. "It's important for all of us to better understand current research and I think it will create more sense of responsibility among researchers," said Hamburg.
The committee will make recommendations to the Director General of WHO, who will ultimately decide whether to act or not.