When Jankui HE was conducting his experiments on the embryos, he may have been thinking about how much he wanted to be the scientist to discover the "cure for HIV". To do this, he broke the guidelines China had in place with regard to bioethics. Regulations state that germline genome editing for clinical reasons is banned. His risk to benefit ratio too high and he also had an invalid ethics review. The board that "reviewed" him was not a registered committee, so he basically went into this extremely risky experiment with no permission. The process that he used to gather consent was also flawed. The 23 page contract the participants signed was completely in english and used techinical jargon that the signers most likely did not understand. On top of that, dropping out of the experiment early would result in a 100,000 RMB fine or 14,130 USD.
There is also no evidence to show he can prevent HIV in the twins, Lulu and Nana. The CCR5 gene is not the only method HIV can infect the body. There are other genes that can do that, and also HIV mutates easily and often. There are also many other less expensive and less dangerous, and more precise methods of preventing HIV transmittance. The only thing that HE for sure accomplished was putting the lives of Lulu and Nana at great risk.
In the future, hopefully scientists will be less willing to break the rules in order to conduct their experiments, and that this incident will spark conversation about the future of bioethics. As we develop new technologies, we need to also determine whether or not we should use them just because we can.
As a result of HE's malpractice, he was sentenced to 3 years in prison along with a substantial fine. China also is in talks to make the enforcement of the ethics guidelines more strict. I think that these are good responses, they make sense, when someone breaks the rules, they have to face consequences.
One situation where the experimenters did not face consequences was Project 4.1 in which the US government used the inhabitants of the Marshall Islands as human guinea pigs to observe the effects of intense radiation. Substantial evidence has been gathered and the government has never explicitly denied the direct poisoning, yet no retribution has been enacted for the sake of the islanders.
Li,
J.-R., Walker, S., Nie, J.-B., & Zhang, X.-Q. (2019). Experiments
that led to the first gene-edited babies: the ethical failings and the
urgent need for better governance. Journal of Zhejiang University-SCIENCE B, 20(1), 32–38. doi: 10.1631/jzus.b1800624
Nuclear
Savage: The Islands of Secret Project 4.1. (n.d.). Retrieved April 19,
2020, from
https://www.videoproject.com/Nuclear-Savage-The-Islands-of-Secret-Project-4-1.html