In November 2018, at a gene-editing summit hosted by scientific societies from the U.S., the U.K., and Hong Kong, a Chinese researcherannouncedthat he had created the worlds first genetically modified babies.He Jiankuifully expected to be celebrated for a scientific breakthrough; hementionedthe Nobel Prize. Instead, he was almost universally condemned.

Key figures associated with theU.S. National AcademiesandU.K. Royal Societyjoined in thecriticismbut did not reject heritable genome editing. Instead, they objected to the Chinese researchers timing. It was too soon, they said. It hadnt been done as they thought it should have been. But according to the researcher now being called a rogue, it was theNational Academies 2017 reportthat 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. Theyset upa carefully selectedinternational commissionwith themandateto map the scientific details ofhowdesigner-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 ofwhetherheritable genome editing should be done at all so that a small group of experts can settle the nitty-gritty details ofhowit 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 buildingbroad societal consensus. It undermines policies in some70 countriesaround the world that prohibit heritable genome editing. And its a slap in the face to the manyscientists,biotech executives,human rights and social justice advocates, and others who support a moratorium or ban on altering the human germline.

The commissions 225-pagereport, 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 tolay to restthe unfounded assumption that engineering the genomes of human embryos will soon be safe and effective. But even the most cautious considerations of technical safety cant 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 cant be separated from its real-world consequences. There are already clear signs that legalizingit would lead to reproductive tourism, jurisdiction shopping, andmission creep. As an example, the U.K.sapprovalof so-called mitochondrial donation for a small number of women with certain mitochondrial DNA diseases wasquickly followedby fertility clinics inUkraine,Spain, and Greeceoffering 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, its 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. Its another attempt to focus discussion on the science, while minimizingthe complex social realities in which scientific and technological developments unfold.

KatieHassonis program director on genetic justice andMarcyDarnovskyis executive director of theCenter 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.

Excerpt from:
Are we mapping a path to CRISPR babies? | TheHill - The Hill

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