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Posted on March 8, 2019 at 12:56 AM

The current issue of the New
England Journal of Medicine
(subscription required) includes four new
articles addressing heritable human gene editing.

George Daley (who was also discussed in a post
on this blog last December 6
) argues
that work must proceed to find a responsible way of editing the human germline for
people with genetic diseases that are devastating, untreatable, and largely
unavoidable unless affected people forego having children.  This would be a limited use of heritable gene
editing, he holds, although it may ultimately become attractive to the 1-4% of offspring
of unrelated people who have genetic diseases, who seek to eliminate risk of
passing on those diseases, or risk of them, to future generations.  He thinks that “our ignorance”
regarding genetic complexity will ultimately prevent attempts at begetting
genetically enhanced, “designer” children.

Matthew Porteus reviews “the
new class of medicines”
becoming possible due to DNA editing.  These include genetically modified cells as
drugs, other attempts to treat existing people with known genetic disease by
editing genes in part of their bodies, and, eventually, editing humans so that
the genes they transmit to future generations are permanently altered. 

Lisa Rosenbaum reviews several of the objections to
heritable gene editing that can stand in the way of scientific
and social consensus
.  Among these,
she points out that people with disabilities often live very fruitful lives—lives
that may never have come to be if their parents had the chance to edit their
genomes, or not brought them to birth in favor of another embryo selected, without
editing, through preimplantation genetic diagnosis.  But some disabilities are too severe to allow
fruitful lives.  In such cases, she asks,
“who is qualified to decide whether it is ethical to alter these children’s
fate?”  If you think you can edit a
baby destined to suffer severe genetic disease, are you obligated to try?  In that case, there’s “no such thing as
an ‘informed decision’…you can’t know until you know.”

Alta Charo, who has co-led several recent prominent
international conferences on human gene editing, argues that the “rogues”
will proceed to edit people irresponsibly, even—and perhaps especially—in the
face of a moratorium.  A more effect
approach would be an “ecosystem” of restrictions, including formal
regulation, restriction on supplies of raw materials (that is, human eggs,
sperm, and embryos) for experimentation, patent and licensing restrictions,
health insurance policies, liability for lawsuits, and the like.  Broad, international consensus is an unlikely
prospect, she argues, but individual nations may enact their own regimes.  Whether this would really stop a black market
is questionable, and heritable editing would become the province of favored
entities (government or industry), I suppose—perhaps slowing the whole process
down but leaving objections to the practice unsatisfied.

Each of these authors condemns He Jiankui’s claimed editing
of Chinese twin girls who were born late last year.  Each of them also clearly takes the position
that human gene editing should be regulated, either because it should proceed
or because it will, inevitably, proceed. 

None of the authors suggests that heritable human gene editing
should “never” be done, the position Francis Collins, the head of the
US National Institutes of Health, took on Gerry Baker’s WSJ at Large on the Fox Business Network on Feb 22, 2019.  (I would link it but it appears that the clip
has not been preserved on the network’s website.)

This blog recently recounted
some reasons
why heritable human gene editing should not be pursued.  But the train appears to have left the
station.

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