In November 2018, the world was shocked to learn that two babies had been born in China with DNA edited while they were embryos--as dramatic a development in genetics as the cloning of Dolly the sheep was in 1996. In this book, Hank Greely, a leading authority on law and genetics, tells the fascinating story of this human experiment and its consequences. Greely explains what Chinese scientist He Jiankui did, how he did it, and how the public and other scientists learned about and reacted to this unprecedented genetic intervention.
Since our last meeting, some scientists have announced their wish to edit the genome of embryos and bring them to term. This illustrates how important our work is, and how urgent. Human germline genome editing poses unique and unprecedented ethical and technical challenges. I have accepted the interim recommendations of WHOs Expert Advisory Committee that regulatory authorities in all countries should not allow any further work in this area until its implications have been properly considered. At this writing, nearly six months after it was announced, the proposed registry does not yet seem to be operating. It does seem to me a useful first step, though the details (particularly around mandatory information disclosure, to which researchers, or companies, might be strongly opposed) may prove sticky. But it is just a start. the world confronted another researcher who wanted to edit embryos to make babies. This one, at least, announced his plans in advance. Meanwhile, as
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41 Rebrikov runs a genetics laboratory at Russias largest IVF clinic, the Kulakov National Medical Research Center for Obstetrics, Gynecology and Perinatology in Moscow, and is a provost for research at the Pirogov Russian National Research Medical University. Interestingly, and perhaps tellingly, like He Jiankui, he has no apparently training or background in reproduction but works on molecular biology methods and the analysis of genome structure and function.42
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Rebrikov told Nature that he hoped to transfer edited embryos for possible implantation by the end of 2019. Rebrikovs plan did differ from Hes in three respects. First, he was planning to help couples where the mother, not the father, was HIV positive and responded poorly to anti-HIV drugs, which would increase, somewhat, the risk that a child would be infected before birth. Second, he talked publicly about his plans in advance. And, third, he made it clear that he was going to seek permission from Russian authorities for his work. Russia, although a member of the Council of Europe, is not a signatory to the Oviedo Protocol, so it is not bound by its prohibition on germline modification. According to the article, Russia does prohibit genetic engineering in most circumstances, but it is unclear whether or how the rules would be enforced in relation to gene editing in an embryo. Rebrikov anticipated that the Russian Ministry of Health would clarify those rules soon.43
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Within a month Rebrikov changed his planned target from CCR5 to the GJB2 gene.44 Some variations in this gene cause deafness.45 The genetic condition is inherited in an autosomal recessive mannera person must have two bad copies of the gene to be deafbut Rebrikov said that there were cases in Western Siberia of some couples who both had the same genetic condition. These people have only deafness-causing variations to pass on to any children, so genome editing would be the only way for them to have hearing children from their genes. Rebrikov said that he had already found five couples where both parents had this condition and did not want their children to be deaf.46
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