CYIL vol. 10 (2019)

MARTIN ŠOLC CYIL 10 ȍ2019Ȏ cognitive enhancement, Jiankui stated that he used CCR5 in order to start with a single gene editing so, in the future, scientists will be able to move on to multiple gene editing 40 . In another video posted on his YouTube channel, Jiankui criticises the use of the term designer babies for children who underwent gene editing to prevent disease. Arguing that the editing in these cases consists in a repair of a small genetic mistake with lethal consequences, Jiankui says that denial of this editing would be inhuman. 41 In his videos, Jiankui repeatedly compares gene editing to IVF which was also very controversial at its beginning 42 . Shortly before the announcement of the birth of Lulu and Nana, Jiankui along with several co-authors published in The CRISPR Journal the draft of five ethical principles for therapeutic assisted reproductive technologies 43 . The article was later retracted for the failure to disclose the authors’ conflicts of interest 44 . The principles are defined as follows: 1) mercy for the families in need , 2) only for serious disease, never vanity , 3) respect a child’s autonomy (regarding her life after birth), 4) genes do not define you (i.e. equality in dignity and potential), and 5) everyone deserves freedom from genetic disease (i.e. genetic cures should be accessible to everyone). Apart from these principles, Jiankui’s article also stresses the need for an open dialogue: “We believe the gene-editing research community therefore has a duty to speak more openly and plainly to the public and lawmakers, despite this being an unfamiliar role for many scientists (including ourselves). Our community should also address ethics more inclusively (…) by discussing and developing guidelines in more cosmopolitan and inclusive venues that include affected families and public stakeholders. Proactively educating journalists is crucial too.” However, open dialogue was not the way Jiankui proceeded. In the course of last years, he consulted partial problems connected to his experiment with foreign experts, never mentioning his work is already in progress 45 . However, he told several U.S. scientists that he was considering establishing pregnancies with genetically edited embryos 46 . The fact that the documents regarding Jiankui’s clinical trials were posted on the online Chinese registry as late their-brains-altered/> accessed 24 May 2019. 40 Global News. Scientist who claims to have made gene-edited babies speaks in Hong Kong. Time: 28:15-29:00. YouTube. (27 November 2018.) accessed 1 June 2019. 41 The He Lab. “Designer Baby” is an Epithet. YouTube. (25 November 2018.) accessed 27 May 2019. 42 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, The He Lab. “Designer Baby” is an Epithet. YouTube. (25 November 2018.) accessed 27 May 2019. 43 JIANKUI, He, FERRELL, Ryan, YUANLIN, Chen, JINZHOU, Qin, YANGRAN, Chen. Draft Ethical Principles for Therapeutic Assisted Reproductive Technologies. The CRISPR Journal. (2018, Vol. 1, No. 6). Also available at accessed 27 May 2019. 44 See LEMIEUX, Julianna. He Jiankui’s Germline Editing Ethics Article Retracted by The CRISPR Journal . Genetic Engineering & Biotechnology News. (20 February 2019.) accessed 27 May 2019. 45 See JOSEPH, Andrew, ROBBINS, Rebecca, BEGLEY, Sharon. An outsider claimed to make genome- editing history – and the world snapped to attention. STAT. (26 November 2018.) accessed 27 May 2019, or BEGLEY, Sharon. Fertility clinics around the world asked “CRISPR babies” scientist for how-to help. STAT. (28 May 2019.) accessed 29 May 2019. 46 See BEGLEY, Sharon. Leading scientists, backed by NIH, call for a global moratorium on creating “CRISPR babies”. STAT. (13 March 2019.) accessed 30 May 2019.

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