Who's responsible for the welfare of genetically-edited children?

At the end of 2018, a Chinese scientist proudly declared to an international conference on genome editing that he had made the big breakthrough. Twin girls, Lula and Nana had been born with an altered gene. The gene, CCR5, allows HIV to infect an important class of cells in the human immune system, but He had put CCR5 out of action by using the CRISPR DNA editing tool on their embryos.  As a result of his intervention, the lucky children should be unable to develop AIDs.

If He Jiankui expected a standing ovation, he was abruptly disappointed. The empire of science exploded with volcanic rage, with calls for an international moratorium on hereditable human genome editing, and a rush to develop principles and international standards that lead to the reports of the World Health Organisation and a consortium convened by the US National Academies of Science and of Medicine and the UK Royal Society. It was abundantly clear that He had acted unethically, for reasons alluded to in the attached article. However, as the world debated and He Jiankui endured his three year prison sentence, the twins were growing up. Editing human genomes might be prohibited, but the crude fact is that laws are broken. The existence of three year old Lulu and Nana therefore prompted a looking glass version of the principle underpinning the 2018 Nuffield Report on Genome editing and human reproduction, that the welfare of a person born following a genomic intervention should be privileged over other ethical considerations: "looking glass", because whereas Principle 1 focused on the decision to implant edited embryos or gametes, in this case, the deed had been done three years previously. Genome edited people are already in the world, so who should be responsible for Lulu and Nana's welfare, and how?

These questions arise at a time of regulatory change in China, where He's conduct has prompted the progress of a new bioethics law. With this in mind, I and other UK experts in the field of human genome editing were invited to speak (in my case, on human rights) at a recent China-UK colloquium on bioethics regulation. Two leading members of the Chinese delegation, Renzong Qiu of the Institute of Philosophy at the Chinese Academy of Social Sciences and Lei Ruipeng, of the Centre for Bioethics at Huazhong University of Science and Technology, and surely key figures in the shaping of the new regulations, are the subject of this article in the London Times. Qui and Ruipeng place the burden of responsibility for the twins' welfare, at least as it arises as a consequence of their being the product of edited embryos, squarely on the shoulders of He Jiankui.

Do read the suggestions of Renzong Qiu and Lei Ruipeng in the article. Ask yourself as you read it, whether their proposals would be compatible with European data protection principles.