Two prominent bioethicists in China are calling on the government to set up a research center dedicated to ensuring the well-being of the first children born with altered genomes. Scientists have welcomed the discussion, but many fear the couple’s approach could lead to unnecessary surveillance of children.
The proposal comes ahead of the possibly imminent release from prison of He Jiankui, the researcher who in 2018 shocked the world when he announced he had created babies with altered genomes. His actions have been widely condemned by scientists around the world, who have called for a global moratorium on the editing of embryos for implantation. Several ethics committees have since concluded that technology should not be used to make changes that can be transmitted.
The researchers say the latest proposal, in a paper by Qiu Renzong of the Chinese Academy of Social Sciences in Beijing and Lei Ruipeng of Huazhong University of Science and Technology in Wuhan, is the first to discuss how to manage the unique situation of children. “It’s an important document,” and a decision welcomed by researchers in China, says Gaetan Burgio, a geneticist at the Australian National University in Canberra.
The document – which Qiu and Lei shared with various scientists, several Chinese ministries and at Nature, but which has not yet been published — states that children need special protections because they are a “vulnerable group”. Gene editing could have created errors in children’s genomes, which could be passed on to their children. They recommend regular sequencing of children’s genomes to check for “abnormalities”, including performing genetic testing on their embryos in the future.
Qiu and Ruipeng also recommend that it contributes to children’s medical expenses and bears primary financial, moral and legal responsibility for their health and well-being, along with Shenzhen South University of Science and Technology, to 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 on the current condition of children and the circumstances of their conception. “China has kept everything so tight,” she says.
In 2018, the world learned that he had implanted embryos into which he had used CRISPR-Cas9 to modify a gene known as CCR5, which codes for an HIV co-receptor, with the aim of making them resistant to the virus. The implantation led to the birth of twins in 2018, and a third child was later born to separated parents. The parents had accepted the treatment because the fathers were HIV-positive and the mothers were HIV-negative, and the couples did not have access to alternative assisted reproductive technologies in China.
In December 2019, he was sentenced to three years in prison. Sources close to him say he should be released soon. Qiu says he might get a job as a researcher.
Eben Kirksey, a medical anthropologist at the Alfred Deakin Institute in Melbourne, Australia, who has written a book on human genome editing1, agrees that he should take some responsibility for the children. He promised 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 paid for, according to Kirksey’s investigations. He and the university should keep their promises of medical assistance, says Kirksey.
The children, who are now toddlers, are the only known children with altered genomes. It’s possible that others have since been born, but Qiu says it’s unlikely to have happened in China, where researchers would have been deterred by He’s harsh punishment. “No scientist will dare to cross the line further,” he says.
But other researchers have shown interest in implanting genome-edited embryos, including Denis Rebrikov, a molecular biologist and geneticist at the Kulakov National Center for Medical Research in Obstetrics, Gynecology and Perinatology in Moscow. He developed a technique to use CRISPR to edit mutations in a gene linked to deafness, called GJB2, but he has not yet implanted a genome-edited embryo due to lack of interest from deaf couples in Russia. “I’m sure that sooner or later we will find a couple who will want to give birth to a hearing child,” says Rebrikov. When he does, he plans to modify the embryos and store them before seeking permission from Russian regulators to implant them.
The three children in China “will not be the last” babies with altered genomes, says Ayo Wahlberg, an anthropologist specializing in reproductive technologies at the University of Copenhagen.
Qiu and Lei wrote their recommendations with the three girls in mind, though Qiu says they could apply to future children. But the researchers expressed several concerns.
Kirksey agrees that the girls are vulnerable as they could encounter psychological and social risks. Their experiences should be the primary concern of researchers and societies. But he disagrees with the level of testing proposed by Qiu and Lei, which he considers excessive, because there is no clear evidence that genome editing has harmed children. “Special protections could also result in more intense surveillance.”
Qiu agrees that children might not be affected. “That’s our wish. But who could be sure? He says their proposal, including regular genome monitoring, addresses that uncertainty.
Burgio says regular sequencing will be needed for the rest of the girls’ lives to assess the extent of the changes and their potential health implications. More advanced techniques have emerged since 2018, and they should be used to take a closer look at the site where genomes have been edited, looking for signs of unwanted changes, he says. “We don’t know what kind of genetic mutations will be made in adulthood and passed on to the next generation,” says Burgio.
But Zhang worries that without clearly defined roles and responsibilities, the document opens up future abuses of power. The main risk for children is probably the socio-political stigma they might face, so “putting them in the hands of a few elites will only add to that, not help,” she says.
Kirksey says lessons must be learned from the story of Louise Brown, who in 1978 became the first person to be born from in vitro fertilization – a procedure that was very controversial at the time. “She was subjected to all kinds of medical tests throughout her life,” says Kirksey, who says Brown described her struggles leading a normal life. “The long-term story of these children will be one of a struggle to be normal if they become public figures like Louise Brown.”