CYIL vol. 10 (2019)

CYIL 10 ȍ2019Ȏ OPENING THE DOORS FOR DESIGNER BABIES? … China in 2015, 20 but they had been destroyed in a few days. It was the ethical dimension of the experiment – or the lack of thereof – which was astounding. Immediately after the publication of the article in the MIT Technology Review, Jiankui released a series of YouTube videos in one of which he announced the birth of the world’s first genetically edited children, twin girls nick-named Lulu and Nana 21 . It was a most unusual announcement of a scientific breakthrough. The tone of the videos corresponded to the popular medium, being significantly emotional and aiming at provoking the sympathy of the public. Only two days later, there was beginning the Second International Summit on Human Genome Editing, a highly anticipated conference where Jiankui had a planned talk. His talk at the conference suddenly came under the spotlight. For an interested reader, we can only recommend watching Jiankui’s presentation of his study and the subsequent discussion 22 . Jiankui allegedly used the CRISPR/Cas9 technique 23 to edit CCR5 gene in the twins’ germline resulting in their immunity against most strains of HIV. A gene variant which has the same effects (delta 32 variant of CCR5) is naturally carried by approximately one per cent of the world population 24 . Jiankui claims that he chose an HIV-related gene instead of genes associated with other lethal diseases for his work because of safety and “real world medical value” 25 . Regarding safety, Jiankui refers to the relatively well-studied delta 32 variant of CCR5 and to the simplicity of his “gene surgery” only consisting in removal of a few DNA letters. Nevertheless, the medical necessity of the editing can easily be questioned since modern anti-retroviral therapy enables HIV-positive patients to lead a wholesome life with almost normal life-expectancy 26 . It can be, therefore, argued that the risks of the editing were by no 20 See CYRANOSKI, David, REARDON, Sara. Chinese scientists genetically modify human embryos. Nature News. (22 April 2015.) accessed 24 May 2019, or REGALADO, Antonio. Years before CRISPR babies, this man was the first to edit human embryos. MITTechnology Review. (11December 2018.) accessed 24 May 2019. The original article published by the Chinese scientific team is available at LIANG, Puping, XU, Yanwen, ZHANG, Xiya, DING, Chenhui, HUANG, Rui, ZHANG, Zhen, LV, Jie, XIE, Xiaowei, CHEN, Yuxi, LI, Yujing, SUN, Ying, BAI, Yaofu, SONGYANG, Zhou, MA, Wenbin, ZHOU, Canquan, HUANG, Junjiu. CRISPR/Cas 9-mediated gene editing in human tripronuclear zygotes. Protein & Cell. (2015, Vol. 6, No. 5), pp. 363-372. 21 The video is available at The He Lab. About Lulu and Nana: Twin Girls Born Healthy After Gene Surgery As Single-Cell Embryos. YouTube. (25 November 2018.) accessed 24 May 2019. 22 Global News. Scientist who claims to have made gene-edited babies speaks in Hong Kong. YouTube. (27 November 2018.) accessed 1 June 2019. 23 CRISPR/Cas9 is a gene editing technique which has revolutionised the field in the last decade. See DOUDNA, Jennifer A., CHARPENTIER, Emmanuelle. The new frontier of genome engineering with CRISPR-Cas9. Science. (2014, Vol. 346, No. 6213), pp. 1077-1085. 24 See GUPTA, Anuroopa, PADH Harish. The global distribution of CCR5 delta 32 polymorphism: role in HIV-1 protection. BMC Infectious Diseases . (2012, Vol. 12, Suppl. 1), p. O16. Jiankui states that the variant is carried by 100 million people. The He Lab. Why We Chose HIV and CCR5 First. YouTube. (25 November 2018.) accessed 27 May 2019. 25 The He Lab. Why We Chose HIV and CCR5 First. YouTube. (25 November 2018.) accessed 27 May 2019. 26 See TRICKEY, Adam, MAY, Margaret T., VEHRESCHILD, Jorg-Janne, OBEL, Niels, GILL, M. John, CRANE, Heidi M., BOESECKE, Christoph, PATTERSON, Sophie, GRABAR, Sophie, CAZANAVE, Charles, CAVASSINI, Matthias, SHEPHERD, Lea, D’ARMINIO MONFORTE, Antonella, VAN SIGHEM,

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