In Nature News, Smriti Mallapaty describes the ethical debate surrounding care for the twin girls whose birth was reported by genome editing researcher He Jiankui.
He, who was jailed for his research, claims to have used CRISPR-Cas9-based gene editing to edit the CCR5 gene in twin embryos that were implanted in a woman who gave birth in 2018. A third genome-edited baby was born to other parents. CCR5 codes for a protein that HIV uses to make its way into human cells.
Two Chinese bioethicists would like to see a research center "dedicated to ensuring the well-being of the first children born with edited genomes," Mallapaty explains, though other experts "are concerned that the pair's approach would lead to unnecessary surveillance of the children."
While no other genome-edited babies have been reported, likely owing to He's punishment and backlash to the work in the scientific community, interest in the approach has persisted, she explains. In the meantime, experts are grappling with bioethical and practical issues surrounding the genome-edited children — from their medical care and health testing to the potential social and psychological effects of their experience.
"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 Huanzhong University of Science and Technology in Wuhan, is the first to discuss how to manage the children's unique situation," Mallapaty writes. Among their recommendations, the pair calls for "regular sequencing of the children's genomes to check for 'abnormalities,' including conducting genetic tests of their embryos in the future."