Exeter, Devon UK • Apr 20, 2024 • VOL XII

Exeter, Devon UK • [date-today] • VOL XII
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Babies by design

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Chinese scientist Jiankui has claimed, in a series of YouTube videos, to have successfully edited the genomes of two embryos. These embryos were then allowed to develop and produced twin girls with altered DNA. Their genomes were edited using CRISPR, a gene editing technique first developed in 2015 to stop the function of a gene called CCR5, which is instrumental in HIV infection. However, while these children were born to an HIV positive father, they themselves were not infected, nor were they at serious risk of acquiring the disease. This problematic method has been condemned on many different fronts.

 

The procedure was performed in secret, without the knowledge of his employer, the Southern University of Science and Technology. The institution now plans to launch an investigation into the “serious violation of academic ethics and standards”. Furthermore, very little data has been presented, meaning that none of the claims made in the videos can even be verified. While preserving the anonymity of patients is, of course, a major concern (especially given the controversial nature of this case), until a paper is published in a respected, peer reviewed journal no concrete evidence exists to support these claims.

The editing of genes is fraught with dangers and the health effects of any mutations are hard to predict

Although these are major infractions in their own rights, perhaps more worrying are the underlying ethics. This work has been almost universally criticised as, if not profoundly disturbing, then at least unconscionably reckless. The editing of genes is fraught with dangers and the health effects of any mutations are hard to predict, not to mention the potential for “off-target” mutations in different genes, and a potentially increased risk of cancer. The overall consensus on genome editing has always been that of a critical need for caution and transparency and that such practices should only be performed in the absence of alternatives, none of which apply to this case.

 

Debate also rages around the potential to use gene editing for “designer babies” edited to improve certain desired traits, such as intelligence. Although, given the current understanding of the complex genetics underlying these traits, not to mention the limitations of technologies available and the mostly universal ethical condemnation of this concept, it seems unlikely. Many countries, including the UK, USA and much of Europe, have an outright ban on germ-line gene editing (where changes are passed down generations). But in China, the laws are much more ambiguous, leading to calls for global oversight and a temporary ban on any further experiments.

 

The need for caution is obvious, however we should also not dismiss the potential for gene therapy to treat a host of serious disorders, and it would be sad if this was overlooked due to the controversy generated by a small number of unorthodox cases.

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