Fears of excessive interference cloud proposal for protecting children whose genomes were edited, as He Jiankui’s release from jail looks imminent.
Two prominent bioethicists in China are calling on the government to set up a research centre dedicated to ensuring the well-being of the first children born with edited genomes. Scientists have welcomed the discussion, but many are concerned that the pair’s approach would lead to unnecessary surveillance of the children.
It would seem likely that the Centre would result in heightened State monitoring and intervention in the lives of these three children. This portends a life very different from other Chinese citizens. Some would argue that oversight is an inevitable consequence of He’s modification of their embryonic genomes. It may be decades before we know if there will be any health consequences and whether they could be passed on to future offspring. We have included links to 18 related items.
Researchers say that the latest proposal, in a document by Qiu Renzong at the Chinese Academy of Social Science in Beijing and Lei Ruipeng at the Huazhong University of Science and Technology in Wuhan, is the first to discuss how to manage the children’s unique situation. “It’s an important document,” and a welcome move by researchers in China, says Gaetan Burgio, a geneticist at the Australian National University in Canberra.
The document — which Qiu and Lei have shared with various scientists, several Chinese ministries and to Nature, but which has not yet been published — states that the children need special protections because they’re a “vulnerable group”. Gene editing could have created errors in the children’s genomes, which could be passed to their children. They recommend regular sequencing of the children’s genomes to check for “abnormalities”, including conducting genetic tests of their embryos in the future.