Hacking the Code of Life by Nessa Carey

Hacking the Code of Life by Nessa Carey

Author:Nessa Carey [Nessa Carey]
Language: eng
Format: epub
ISBN: 9781785784989
Publisher: Icon Books Ltd
Published: 2019-04-20T16:00:00+00:00


Look east

While regulatory authorities in the USA and Europe take an understandably cautious approach to moving gene editing into humans, things are moving rather faster in China. There are claims that around 100 patients have been treated in Chinese hospitals using the most advanced forms of gene editing.11 The problem is that this statement is based on claims made by doctors to western journalists. No scientific papers or clinical reports have been published, so it’s hard to know which conditions were targeted or whether any improvements or stabilisation in disease were achieved using the new technology.

Why is China further ahead than the rest of the world in trialling this technology? It’s hard to be sure, given the lack of detail, but some of the reason is almost certainly a medical culture that is less risk-averse, and with a lighter regulatory touch. Where you stand on this question is probably dependent on your own position. If you have a life-ending/life-limiting condition that is otherwise untreatable you might want to have access to new approaches sooner rather than later. On the other hand, reduced regulatory oversight isn’t such a great thing if the proposed approach is flaky.

It’s not clear why the Chinese scientists and clinicians aren’t publishing their methods and clinical results in the medical literature. However, some of this may be a consequence of the apparently lower levels of regulation in China. If the trials don’t meet the ethical standards of the western authorities, many journals outside China will be reluctant to publish the papers describing the interventions.

There may also be a pragmatic reason for the lack of publications. The technologies that underpin gene editing are incredibly valuable and the organisations that created them want to protect the intellectual property very aggressively. They will expect to be paid large amounts of money if anyone uses their breakthroughs commercially, and in China a great deal of medicine takes place in the context of a private healthcare system. If you don’t publish the details of your gene editing treatments, it’s very difficult for anyone to sue you for infringing their intellectual property.

Whatever the reason, it’s such a shame that so little information is coming out of China. Sharing this information openly would almost certainly speed up progress globally for the benefit of patients. It would give everyone a better heads-up on what is effective and what isn’t and what the safety risks are, if any.



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