OCR
LEGAL THINKING ABOUT OUR EDITED SELF PRIDE AND PREJUDICE At the end of November 2018, Chinese researcher He Jiankui revealed the birth of the first gene-edited babies, Nana and Lulu." The babies’ names, of course, are pseudonyms; the twins’ birthplace and their real names are unknown. He Jiankui’s glory did not last long, as even the Chinese authorities have since distanced themselves from experimental interventions in human subjects. It seems that the first announcement of a new biotechnological method is often scandalous, and the research results are surprising. Racing to be the first always involves keeping secrets from competitors. However, He Jiankui was not in a competitive position, as scientific consensus at the moment is against this kind of intervention; besides, the intervention was not even justified. He Jiankui announced his work on gene editing at the Second International Summit on Human Genome Editing, in Hong Kong, on November 25, 2018. The news was treated as a scientific success, but not long after the announcement several experts on bioethics suggested that such a surprising transformation could only occur if ethical approval procedures were ignored. It turned out that transparent ethical procedures indeed did not take place. Human gene editing, like many other biotechnological innovations, involves terminological novelties, too. In this case, changing the previous terms genetic manipulation or genetic modification to gene editing, also changed the connotation and suggested a much smaller intervention or correction with a better result. In all, 22 embryos were gene-edited, and 11 embryos were used in six implantation attempts before Nana and Lulu were born. The procedure can raise many kinds of ethical concerns. One of them was the result they wanted to achieve by gene editing. The intervention’s goal was to confer genetic resistance to HIV. Dr He claimed that he received approval from Shenzhen Women and Children’s Hospital, but he failed to obtain authorization from his university or the four other hospitals from which some of the gene-edited embryos came. Even though the couples participating in the experiment were informed, the focus of their consent was much more on the copyright of photographs of the unborn babies than highlighting the novelty of the procedure. Is it appropriate to ask for the public’s help in the acceptance of a scientific announcement instead of going through prior professional challenges? Although He made an attempt to publish his results in a scientific journal a few days before the Hong Kong Summit, the CRISPR Journal, founded not long before, had no idea that the babies had actually been born. 15 BBC News, He Jiankui Defends ‘World’s First Gene-Edited Babies, BBC News (28 November 2018), https://www.bbc.com/news/world-asia-china-46368731. + 349 «