In November 2018, at a gene-editing “summit” hosted by scientific societies from the U.S., the U.K., and Hong Kong, a Chinese researcher announced that he had created the world’s first genetically modified babies. He Jiankui fully expected to be celebrated for a scientific breakthrough; he mentioned the Nobel Prize. Instead, he was almost universally condemned.
Key figures associated with the U.S. National Academies and U.K. Royal Society joined in the criticism but did not reject heritable genome editing. Instead, they objected to the Chinese researcher’s timing. It was too soon, they said. It hadn’t been done as they thought it should have been. But according to the researcher now being called a “rogue,” it was the National Academies’ 2017 report that had given him the green light for his experiments.
In the aftermath of this headline-grabbing debacle, the scientific societies decided on a do-over. They declared it time to “define a rigorous, responsible translational pathway” toward clinical use of heritable genome editing. They set up a carefully selected international commission with the mandate to map the scientific details of how designer-baby technology could be brought to the fertility clinic.
This mandate was flawed from the start. The idea that now is the time to set aside the deeply controversial question of whether heritable genome editing should be done at all so that a small group of experts can settle the nitty-gritty details of how it should take place is entirely backward. It flies in the face of the widely shared acknowledgment that scientists alone cannot make this decision; that we must have wide-ranging and inclusive public discussions aimed at building broad societal consensus. It undermines policies in some 70 countries around the world that prohibit heritable genome editing. And it’s a slap in the face to the many scientists, biotech executives, human rights and social justice advocates, and others who support a moratorium or ban on altering the human germline.
The commission’s 225-page report, released on Sept. 3, does have some strong points. It is more cautious than the previous report, recommending that heritable genome editing should initially be allowed only in the exceedingly rare cases where embryo screening for severe genetic conditions would not be an option. And it paints a vivid picture of the significant technical hurdles facing those eager to pursue heritable human genome editing: shortfalls in the editing tools, in the technologies necessary to test safety and efficacy, even in our understanding of the genetics underlying most heritable diseases.
These findings ought to lay to rest the unfounded assumption that engineering the genomes of human embryos will soon be safe and effective. But even the most cautious considerations of technical safety can’t stand-in for the fundamental point that the decision about whether to allow heritable genome editing should be driven by our values, not settled by the science.
The commission claims they are not endorsing heritable genome editing, merely constructing maps of the technological path in case a country should wish to use them. At best, this puts the cart before the horse – and sends both horse and cart down a one-way road.
Heritable genome editing can’t be separated from its real-world consequences. There are already clear signs that legalizing it would lead to reproductive tourism, jurisdiction shopping, and mission creep. As an example, the U.K.’s approval of so-called “mitochondrial donation” for a small number of women with certain mitochondrial DNA diseases was quickly followed by fertility clinics in Ukraine, Spain, and Greece offering this high-risk technique, with no evidence of effectiveness, for general and age-related infertility.
A similar trajectory is all too easy to foresee if heritable genome editing is approved, even for limited circumstances. Especially where fertility services are offered on a for-profit basis, it’s unlikely that any boundaries would hold. We could soon see fertility clinics marketing genetically “upgraded” embryos, tempting parents-to-be with ads about “giving their child the best start in life.” From there, a normalized system of market-based eugenics could emerge, exacerbating already existing discrimination, inequality, and conflict.
Amid our multiple ongoing crises, it would be easy to overlook another report on still speculative biotechnology. But this one represents a profoundly consequential step, one that tries to settle in advance the coming decision about whether to engineer genes and traits passed on to future children and generations. It’s another attempt to focus discussion on “the science,” while minimizing the complex social realities in which scientific and technological developments unfold.
Katie Hasson is program director on genetic justice and Marcy Darnovsky is executive director of the Center for Genetics and Society, a non-profit organization based in Berkeley, California that works to encourage responsible uses and effective governance of human genetic and assisted reproductive technologies.
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