A Chinese researcher stunned the medical world by announcing that he had altered the DNA of embryos, resulting in the births of twin girls with enhanced protection against infection. In the ensuing uproar, doctors, scientists, ethicists and governments denounced the project, demanded an investigation and the suspension of more work by the scientist until its effects and implications are better understood. Gene editing may be inevitable, but this is not the way to do science. But projects of this nature are likely to become ever more common, and the science profession and society as a whole must better prepare for this grim future.
On paper, He Jiankui looks like an ordinary scientist. He received a PhD in biophysics from Rice University and did postdoctoral research at Stanford before returning to China. He, who was according to his Stanford advisor “super bright” and “at the cutting edge of trying to apply new technologies to biology,” returned to the Southern University of Science and Technology in Shenzhen, where he commenced his work.
Convinced that gene editing was inevitable, He decided to focus on HIV because the spread of that virus is a mounting problem in China. In 2016, he began efforts to figure out how to edit genes to make them immune to HIV infection. He aimed to disable the CCR5 gene that allows the HIV virus, which causes AIDS, to enter a cell. He used the CRISPR-cas9, a tool that allows the editing of genes, to change the DNA in the embryos of seven couples in which the men had HIV and the women did not, undergoing in-vitro fertilization. That project culminated in the birth of the twin girls a few weeks ago.
Condemnation has been almost universal. Julian Savulescu, director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford, called the project “monstrous” and the equivalent of “genetic Russian roulette.” Joyce Harper, a professor in genetics and human embryology at the Institute for Women’s Health at University College London, said the gene editing was “premature, dangerous and irresponsible.”
Southern University of Science and Technology called the project a “serious violation of academic ethics and standards.” It added that He has been on leave since Feb. 1. China’s National Health Commission said it was “highly concerned” and ordered an investigation. More than 120 Chinese scientists issued a joint statement on Weibo condemning human genome-editing research, and said that He’s work is a “huge blow” to the reputation of Chinese biomedical research. He has defended his work, claiming that he did it to protect children against the spread of AIDS: “I understand my work will be controversial, but I believe families need this technology.” He added that “There will be someone, somewhere, who is doing this. If it’s not me, it’s someone else.” And for all the outrage, there is a demand for such work. At least one study shows that the Chinese public supports the use of gene editing for medical purposes.
Yet his technique indicates He knew he was skirting the edge of acceptable science. He did not publish his early work in which he modified mice and monkey DNA. He consulted the ethics committees from hospitals uninvolved in the research. He did not seek approval from government regulators, did not list his study on the online registry of clinical trials in China until long after it began, and did not inform staff working on the project that it involved gene editing. The patient consent forms were not precise. And the hospital where the work occurred has reported that it believes signatures on the ethics review form are forged. He announced the project by releasing a YouTube video: There was no paper, no peer-review and no independent verification.
He is likely right that such work is inevitable. Human beings will always try to protect their offspring, and figure out ways to ensure that their children have healthier and safer lives. But that makes it even more important that the science be done properly. He may be convinced that he got this splice correct, but there is no certainty that it will not have other effects. We have no real understanding of the totality of human biology and there is no way yet to know what the effects of selective manipulation will be. It is dangerous for any one person, no matter how smart, to assume the mantle of creator himself.
All such research should be suspended until more rigorous study can be done. In Japan, a government panel of experts agreed in September on draft guidelines on the use of genome-editing technology on fertilized human eggs, which limited the use solely for basic research in assisted reproductive technology and prohibited putting the eggs back into the wombs of humans or animals. A government bioethics panel in 2016 rejected the use of the technology in clinical trials partly because of the unknown impact on future generations. That will not satisfy men like He but delay is wise. But scientists, ethicists and governments the world over must address this topic with urgency.
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