He Jiankui’s fundamental ethical misstep was exposing children to risk, not gene editing
The debate continues over the ethics of genetically editing the genome and making it possible to pass on changes to future generations. In the latest contribution, Peter Singer and Julian Savulescu, two of the most notable names in bioethics, contend in the journal Bioethics that modifying the genome could be ethical.
What sparked the controversy, of course, is “the recent gene editing of two healthy embryos by the Chinese biophysicist He Jiankui, resulting in the birth of baby girls born this month, Lulu and Nana”. Singer and Savulescu point out that “He Jiankui's trial was unethical, not because it involved gene editing, but because it failed to conform to the basic values and principles that govern all research involving human participants.”
As more of the facts about the trial emerge, it seems likely that He exposed the embryos – and now the babies – to unreasonable risk, apart from misinforming their parents. This was the fundamental ethical error in his experiment, not his willingness to alter the genome. Singer and Savulescu appear to feel that human germ line editing is all but inevitable:
At the Second International Summit on Human Genome Editing, where He revealed his research, the National Academies of Science, Engineering and Medicine called for a ‘translational pathway to human germ line gene editing’. In our view, to be ethically justifiable, such a ‘translational pathway’ should be: catastrophic single gene disorders (like Tay–Sachs disease), then severe single gene disorders (like Huntington's disease), then reduction in the genetic contribution to common diseases (like diabetes and cardiovascular disease), then enhanced immunity and perhaps even delaying ageing.
How about enhancement – not curing diseases, but improving human potential in areas like sporting ability or intelligence? It is not clear that this will ever become possible, as the genetic basis of IQ is far from certain. However, if it were possible and safe, Singer and Savulescu would be in favour of it, provided it were equitably available:
Further into the future, gene editing could be used for enhancement of the genetic contribution to general intelligence. China is currently funding research that is trying to unravel the genetics of high intelligence. Perhaps the best we can hope for is harm reduction and a regulated market to make important enhancements, such as resistance to disease or the enhancement of intelligence (should it ever be possible), part of a basic healthcare plan so that the benefits of gene editing are distributed equally.
Michael Cook is editor of BioEdge
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