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Posted on October 24, 2019 at 9:16 PM

Nature reports that Russian scientist Denis Rebrikov has
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
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

  • 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??

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