Nature reports that Russian scientist Denis Rebrikov has started experiments intended to lead to editing a gene, in human oocytes (egg cells) associated with human deafness. Prior reports had claimed that he was working on eggs from deaf women in an attempt to repair the defect and, presumably, provide a normal egg for IVF. This apparently is not the case—yet. At the moment, he is using eggs donated by women who can hear, to do experiments on editing the gene in question and ferret out what might go wrong in the process—that is, is the right gene edited, is only the right gene edited, and related questions.
He says he has had discussions with deaf women, but has not yet sought approval from the Russian regulators to try IVF with a gene-edited egg. The regulators appear reluctant, and Rebrikov says he will not proceed without prior approval. He had previously said he wants to edit the same HIV-susceptibility gene that was edited in twin babies born in China last year, but it looks like there aren’t too many candidates for that approaching him, and that attempt has not gone forward—yet.
He’s clearly impatient. Other scientists working in the gene editing field—which has broad applications short of making “gene-edited babies”—are urging patience, and saying that it is at a minimum rashly irresponsible to rush ahead with the effort, particularly for non-fatal conditions like deafness. And they are right—too little is known to justify the effort—yet—even if one thinks there are conditions for which it ethically could or even should be attempted.
But “the field” is working hard to define a path forward. The second meeting of an international panel discussing how to move ahead meets in London November 14-15.
Nature includes a brief Q+A with Dr. Rebrikov. Forgive me, but some of it is chilling, reflecting blindness to the deeper issues. Paraphrasing selected questions, quoting the answers, offering italicized commentary:
- Question: don’t the risks of trying this outweigh the benefits, for a non-life-threatening condition like deafness? Answer: “Any new drug carries certain risks. The deafness model is the most appropriate for applying genomic editing at the zygote [newly fertilized egg] stage. And it is only for deaf parents to decide whether … deafness is enough to not expect the same for their child.” Beg pardon: heritable gene editing is NOT A DRUG, and the risk-benefit decision is NOT solely the province of private decisions about reproductive-related risks.
- Question: the regulators point out that editing people is currently not permitted. Answer: “Laws are written to change them. As soon as we demonstrate the safety of technology, the rule will change.” Ahem: some laws are enduring, even eternal—cf. divine law. Recognizing that the regulators’ judgment is not divine, eternal law, reverent attention to the latter should be a paramount concern. And ‘safety’ appears to be narrowly defined here, blissfully ignoring the deeper human questions posed by modifying people’s genes permanently.
- Question: people trying to build a regulatory framework for human genome editing think researchers should slow down until the framework is agreed upon. What do you say? Answer: “Are you serious? Where did you see the researcher willing to slow down?” Hello! McFly! We are not ASKING you to slow down.
- Question: Russian regulators and the World Health Organization say it is too soon to create edited children. What do you say? Answer: “What does it mean, too soon? Lenin said ‘yesterday was too early, tomorrow it will be too late.”.
Lenin?? LENIN?! For real??