> It’s not clear if the participants in He’s trial were actually aware of what they were signing up for. He relied on an AIDS association to reach out to the patients and falsely described his work as an “AIDS-vaccine development project.” He told delegates at the Hong Kong summit that he personally took the volunteers through the informed-consent process, along with another professor. But taking consent is a specific skill that requires training; He had none.
> The consent document that he used describes CRISPR and gene editing, but it does so in heavily technical language. He has said that his patients were “very well educated” and already knowledgeable about gene-editing technology. But according to a news report from the Chinese magazine Sanlian Life Week (which has since been removed, but not before a digital copy was saved and translated), one of the people who dropped out of the experiment had only a high-school understanding of biology, and only heard the term “gene editing” when news stories about He’s experiment broke. The man claimed that he was not informed about the risks of off-target effects, or about the fact that gene editing was a prohibited and ethically controversial technology.
> Also, the consent form “is not a consent form,” says Kelly Hills, a bioethicist at Rogue Bioethics. “It’s a business form, of the kind that a company might use when subcontracting.” For example, the section about possible risks says nothing about any negative consequences of deactivating CCR5, and is instead more focused on absolving He’s team of legal responsibility for problems arising from the procedure. The form also gives He’s team rights to use photos of the babies in magazines, calendars, billboards, propaganda, product packaging, and posters in cars and elevators.
> I dont think anyone has evidence that he did not do it.
The burden on proving he did it, not on proving he didn't. Of course, doing what he did the way he did it is much worse than lying about doing it, but logic is logic. As for your link:
> 14. A leading geneticist came to He’s defense.
> In an interview with Science, George Church, a respected figure from Harvard and a CRISPR pioneer, said that he felt “an obligation to be balanced about” the He affair. Church suggested that the man was being bullied and that the “most serious thing” about his experiment was “that he didn’t do the paperwork right.” “[Church’s] comments are incredibly irresponsible,” says Alexis Carere, who is president-elect of the Canadian Association of Genetic Counsellors. “If someone contravenes the rules that we have laid down, we are very justified in speaking out about it. The unfortunate effect of this is that it makes it seem like there is some kind of balance, and George is just in the middle. There is not.”
> Carere was also dismayed at the rest of the interview Church gave, where “every sentence was a new ethical maxim that I had never heard of,” she says. For example, Church noted that “as long as these are normal, healthy kids it’s going to be fine for the field and the family.” But unethical actions are still unethical, even if nothing goes wrong. Arguing otherwise gives a pass to scientists who blow past ethical norms, provided that they find something interesting. “It’s bizarro-land consequentialist ethics,” Carere says.
Well, he would say that. Can I read statements of those 4 professors?
https://www.theatlantic.com/science/archive/2018/12/15-worry...
> 4. There were problems with informed consent.
> It’s not clear if the participants in He’s trial were actually aware of what they were signing up for. He relied on an AIDS association to reach out to the patients and falsely described his work as an “AIDS-vaccine development project.” He told delegates at the Hong Kong summit that he personally took the volunteers through the informed-consent process, along with another professor. But taking consent is a specific skill that requires training; He had none.
> The consent document that he used describes CRISPR and gene editing, but it does so in heavily technical language. He has said that his patients were “very well educated” and already knowledgeable about gene-editing technology. But according to a news report from the Chinese magazine Sanlian Life Week (which has since been removed, but not before a digital copy was saved and translated), one of the people who dropped out of the experiment had only a high-school understanding of biology, and only heard the term “gene editing” when news stories about He’s experiment broke. The man claimed that he was not informed about the risks of off-target effects, or about the fact that gene editing was a prohibited and ethically controversial technology.
> Also, the consent form “is not a consent form,” says Kelly Hills, a bioethicist at Rogue Bioethics. “It’s a business form, of the kind that a company might use when subcontracting.” For example, the section about possible risks says nothing about any negative consequences of deactivating CCR5, and is instead more focused on absolving He’s team of legal responsibility for problems arising from the procedure. The form also gives He’s team rights to use photos of the babies in magazines, calendars, billboards, propaganda, product packaging, and posters in cars and elevators.
> I dont think anyone has evidence that he did not do it.
The burden on proving he did it, not on proving he didn't. Of course, doing what he did the way he did it is much worse than lying about doing it, but logic is logic. As for your link:
> 14. A leading geneticist came to He’s defense.
> In an interview with Science, George Church, a respected figure from Harvard and a CRISPR pioneer, said that he felt “an obligation to be balanced about” the He affair. Church suggested that the man was being bullied and that the “most serious thing” about his experiment was “that he didn’t do the paperwork right.” “[Church’s] comments are incredibly irresponsible,” says Alexis Carere, who is president-elect of the Canadian Association of Genetic Counsellors. “If someone contravenes the rules that we have laid down, we are very justified in speaking out about it. The unfortunate effect of this is that it makes it seem like there is some kind of balance, and George is just in the middle. There is not.”
> Carere was also dismayed at the rest of the interview Church gave, where “every sentence was a new ethical maxim that I had never heard of,” she says. For example, Church noted that “as long as these are normal, healthy kids it’s going to be fine for the field and the family.” But unethical actions are still unethical, even if nothing goes wrong. Arguing otherwise gives a pass to scientists who blow past ethical norms, provided that they find something interesting. “It’s bizarro-land consequentialist ethics,” Carere says.