“How to Protect the First ‘CRISPR Babies’ Prompts Ethical Debate: Fears of Excessive Interference Cloud Proposal for Protecting Children Whose Genomes Were Edited, As He Jiankui’s Release from Jail Looks Imminent”, 2022-02-25 (; backlinks):
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.
The proposal comes ahead of the possibly imminent release from prison of He Jiankui, the researcher who in 2018 shocked the world by announcing that he had created babies with altered genomes…Researchers say that the latest proposal, in a document by Qiu Renzong at the Chinese Academy of Social Sciences 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.
Qiu and Ruipeng also recommend that He contribute to the children’s medical expenses, and take primary financial, moral and legal responsibility for their health and well-being, along with the Southern University of Science and Technology in Shenzhen, with which He was affiliated, and the government.
But Joy Zhang, a sociologist at the University of Kent in Canterbury, UK, says it is difficult for scientists to know what recommendations to make because there is almost no information about the children’s current condition, and the circumstances of their conception. “China has kept everything so tight”, she says.
…Eben Kirksey, a medical anthropologist at Alfred Deakin Institute in Melbourne, Australia, who has written a book on human genome-editing, agrees that He should shoulder some responsibility for the children. He promised that they would receive health insurance for the first 18 years of their lives, but because the twins were born prematurely, they were initially denied coverage, which He initially stepped in to pay, according to Kirksey’s investigations. He and the university should make good on promises of medical assistance, Kirksey says.