A year ago this week, geneticist He Jiankui made the shocking announcement of the birth of twin girls in China whose genomes had been edited to prevent HIV infection. Undeterred by the global opprobrium heaped on He, Russia’s Denis Rebrikov told Nature last month about more experiments involving gene editing of human eggs, to help deaf couples give birth to children who would lack the genetic mutation carried by their parents that impairs hearing.
At the same time, every month seems to bring another gene-editing advance. The latest tool, a precision ‘search and replace’ technique called prime editing, was described in Nature last month by David Liu at the Broad Institute of MIT and Harvard in Cambridge, Massachusetts, and his colleagues (A. V. Anzalone et al. Nature http://doi.org/dczp; 2019). Randall Platt at the Swiss Federal Institute of Technology (ETH) in Basel called it a “giant leap” towards the goal of making specific changes to the blueprint of life.
The speed of technological advance, coupled with some scientists’ determination to press ahead with editing human germline cells — eggs, sperm and embryonic cells — has been sounding alarm bells for nearly five years. Editing could produce unpredictable changes that an individual’s descendants will inherit — with potentially wide-reaching societal implications. Academies, governments and ethicists have been considering how to regulate this. But the manner in which it is being done is suboptimal.
In 2018, the World Health Organization (WHO) set up an independent expert panel to advise on the oversight and governance of human genome editing. A separate international commission on the clinical use of human germline genome editing gathered for its second meeting in London last week. This commission was established by the US National Academy of Science, the US National Academy of Medicine and Britain’s Royal Society, to recommend standards and criteria for germline genome editing. Both will report next year, and the commission’s report will feed into the WHO process.
But the WHO panel has already recommended setting up a public registry for genome-editing experiments. It has also made an interim recommendation that “it would be irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing”, which has been accepted by the agency’s leadership. The international commission has yet to say what it thinks, but it would make little sense for it to disagree.
It isn’t entirely clear why separate initiatives are needed, and it is unfortunate that representatives of people with disabilities are not part of the decision-making process. However, it isn’t too late to rectify these issues, and the two initiatives must, in the end, converge.
There are very real risks that unregulated clinics claiming to be able to eliminate inherited conditions will use untested, possibly harmful procedures. A sure-fire way to give such clinics the green light is an absence of agreed global standards. When the two groups report next year, they must speak with one voice and have more inclusive representation.
Nature 575, 415-416 (2019)