An unethical experiment only becomes more unethical if not all of its details are made public. That is what various international researchers say which will be in the magazine this week Nature Biotechnology were asked about the experiment in which the Chinese researcher He Jiankui gave birth to three genetically engineered babies, much to the shock of the world. That happened three years ago, but little has been heard about it since. A commission of inquiry set up by the Chinese authorities has got to the bottom of everything that happened in He’s lab, but their findings are unknown. “We have heard nothing about it, despite various requests,” British embryologist Robin Lovell-Badge told the trade journal in frustration.
He Jiankui has fallen from grace after all the commotion in China, he was sentenced behind closed doors by a people’s tribunal to three years in prison and a fine for “illegal medical practices”. He has not been heard from since his appearance at a conference in Hong Kong in late 2018, where he announced his genetic testing. Nature Biotechnology now reports “on the basis of anonymous sources close to He Jiankui” that he himself no longer has any plans to share the data of his notorious experiment.
But several scientists believe the details of the trial still need to be published. While it will be difficult to find a scientific journal that would publish the results of this “contaminated” research, it is in the interest of science and especially of the children born from the experiment to understand exactly what is in it. their dna happened. It concerns the twins Lulu and Nana, and a third girl who was born at the beginning of 2019 and by Nature Biotechnology just to be called Amy for convenience. The crispr babies are now crispr toddlers, but nobody knows how they are doing.
From a leaked manuscript that He Jiankui sent to Nature and the slides he presented at the convention in Hong Kong, it is only partially possible to make out what has been genetically altered in them. He’s intention was to make a change in the DNA of the embryos that would make people resistant to HIV infection. That didn’t work out nicely. In Lulu, only one of the two copies of the intended receptor gene is changed, in Nana there are different changes in both copies. Amy also only has one altered copy. It is still unclear whether the CRISPR procedure has changed the girls’ DNA in unintended places.
How does this affect their health and well-being? And what about their progeny? There should be a lot more openness about that. Physician researcher Eli Adashi of Brown University therefore also believes the results of an unethical experiment should be published. “It may be an unfortunate historical record, but it is a record.”
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