14 June 2019
Common statement between the Association for Responsible Research and Innovation in
Genome Editing (ARRIGE), the Genome Writers Guild (GWG) and the Japanese Society for
Genome Editing (JSGE)
From Russia, a molecular biologist, Denis Rebrikov, has announced he intends to genome edit
human embryos later this year, to inactivate the CCR5 gene by introducing the genomic
deletion, and to implant these gene-edited embryos in the uteri of HIV-infected women. This
researcher claims that he has a safer method than used before, enabling him to achieve hisgoals in more than 50% of the cases. This shocking news comes just seven months after welearned of the first reported case of genome editing of human beings, carried out by a Chinesescientist, without global acceptance and ethical oversight by peers, which was strongly
opposed and unacceptable by the scientific community, including the three groups signing thisstatement.
CRISPR mediated genome editing is a powerful tool to modify the DNA sequence at the target
site in the genome, but unfortunately, we are still not able to fully control the output ofgenome editing experiments. In some cases, unexpected large deletions, insertions, inversions
or rearrangements may occur around the targeted site and, perhaps, elsewhere in thegenome. From numerous animal experiments, we learned that genome editing can be“mosaic” of some cells in an embryo, which is difficult to control with the current technology.
Because of those technical uncertainties, it is unwise and ethically unacceptable to transfer
this current risk and uncertainty to human beings. Further discussion is needed to assess therisk-benefit from scientific, medical, ethical, and social points of views, and to the parents andto the babies who will be born without prior consent for editing his/her genomic sequence. For
example, the consequences of artificially deleting CCR5 gene should be carefully investigated,because the recent publication in Nature Medicine reported a 21% increase in the all-cause
mortality rate in individuals in UK who have homozygous deletion in the CCR5 gene. Cautious
oversight, deliberation, and ethical consideration may in the future allow for safe andreasonable use of genome editing in the human embryos, but as things stand this experimentis highly irresponsible and should be prevented. The authorities should closely monitor theactivities of this researcher and others like him who are attempting such irresponsible
experiments under hasty consideration.
We - ARRIGE, GWG and JSGE - have joined together in this common statement to strongly
request the urgent implementation of a more comprehensive framework for the international
regulation of human gene editing activities in embryos, prevent the application of thesepowerful technologies on human embryos leading to live births before they are deemed safe,helpful and acceptable, and to launch a broad and open debate with all stakeholders, including
the public. International agencies such as United Nations or the World Health Organization
should also cooperate and work with the sovereign states to promote or update existing
universal declarations with the same aim.
The CRISPR genome editing revolution has a tremendous potential to bring benefits and cures
to humankind. But its deliberate misuse can also bring uneasiness, anxiety and mistrust. As asociety we should stand against any attempt to use these techniques prematurely,
dangerously and irreversibly on human beings.