CYIL vol. 10 (2019)

CYIL 10 ȍ2019Ȏ OPENING THE DOORS FOR DESIGNER BABIES? … as in November 2018 was also considered suprising 47 . The main problem is, however, broader. The scientific community expected a rigorous public and expert debate on regulations and ethics of gene editing to take place before the first edited child would be born 48 . Jiankui kept his work in secret up to the twins’ birth, effectively making it impossible for anyone to try to stop him. Even more paradoxical might be the fact that in a speech in 2017, Jiankui called for patience and caution in proceeding with gene therapy. He recalled the death of Jesse Gelsinger, the world’s first person who died in a gene therapy clinical trial in 1999. The tragedy hindered the whole field of gene therapy for at least more than a decade. Jiankui suggested in his 2017 talk that CRISPR researchers should remember the Jesse Gelsinger case and reminded them that “we should do this kind of slow and with a bit of caution, because a single case of failure may kill the entire field”. 49 It is obvious that Jiankui was the first one to ignore his own recommendation. Before the experiment, Jiankui’s career was extremely promising. After obtaining his Ph.D. in biophysics in 2010 in the USA and working in the country for two more years, Jiankui moved back to China. He founded several biotechnological companies and received financial incentives from the government as a part of the prestigious science program called the Thousand Talents Program. 50 Only a few days after the announcement, he disappeared. Later it was revealed that he was sequestered in the SUSTech guesthouse 51 . The guards are positioned near the guesthouse, 52 even though Jiankui claimed in an email and phone conversation with his Western colleagues that he is staying in a university apartment “by mutual agreement” and can take walks outside the building 53 . In an email to a U.S. bioethicist, He Jiankui even expressed that he recognises he “ pushed too quickly into a first-of-kind clinical study without the necessary open dialog ” 54 . Later, Jiankui was fired from the SUSTech 55 . The Chinese authorities 47 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. 48 See ibid. 49 As cited in ibid. 50 See ibid., or COOK, Michael. China’s first law of science: do not embarrass the government. BioEdge. (9 December 2018.) accessed 27 May 2019. 51 See CHEN, Elsie, MOZUR, Paul. Chinese Scientist Who Claimed to Make Genetically Edited Babies is Kept Under Guard. The New York Times. (28 December 2018.) accessed 27 May 2019. 52 See ibid. 53 See BEGLEY, Sharon. “CRISPR babies” scientist: “I’m actually doing quite well”. STAT. (9 January 2019.) accessed 27 May 2019. 54 Cited in BEGLEY, Sharon. He Jiankui tried to protect “CRISPR babies” against HIV. But his attempted fix shortens lives, study shows. STAT. (3 June 2019.) accessed 3 June 2019. 55 See SHEPHERD, Christian, WONG Sue-Lin, KELLAND, Kate, MACFIE, Nick, LAWSON, Hugh. Chinese scientist who gene-edited babies fired by university. Reuters. (21 January 2019.)

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