China is racing ahead in human biotechnology — it really helps when you can disregard ethical concerns altogether. It especially helps when you pay lip service to bioethics while simultaneously carrying out a major research program that directly contradicts the ethical concerns you’re piously declaiming.
There is a heroic history of scientists engaging in self-experimentation. The example that comes to mind is Barry Marshall, who drank down a solution of Helicobacter pylori to prove that the bacteria was the causal agent behind stomach ulcers. No research review committee would have approved such an experiment, but it paid off in that he won the Nobel for it. He also made himself very sick. It was a dramatic and rather stupidly dangerous gesture — there are safer ways to evaluate pathogens, and we drill safety into our students all the time.
Maybe we’re wrong. Maybe we should be encouraging students to lick random slime they find on the lab benches. We might lose a few, but the tiny percentage who discover brand new drugs or new diseases will make the deaths worthwhile, right?
But that’s self-experimentation. The new era of gene editing really is meaningless when done on yourself. It’s got to be done on embryos, on someone else. Is modifying genes in some other helpless, innocent person still heroic, or even heroically stupid? I don’t think so. We’re at the stage where experimentation on human cells is important, but the ethical guidelines don’t allow you to grow up that blastocyst to birth, because at that point you have a person who did not consent to the manipulation, and they have to live their whole life with the consequences of your tinkering.
That didn’t stop He Jiankui from launching a research program in which he genetically modified IVF embryos with Crispr, implanted them back in their mothers, and then cheerfully announced when the first of them gave birth.
There are more than a few problems with this experiment.
- We don’t know all the limitations of Crispr yet. He assures everyone that there were no spurious modification of the genome in this case. Were there other cases, though? Do we trust that failures would be reported?
The entire purpose of this modification was prophylactic. They knocked out a component of the immune system that HIV uses to infect cells, presumably giving the child resistance to AIDS. Was this a pressing need? The child did not have a disease, they deleted a molecule to make it less likely they would get a disease. (The father is HIV-positive, so there was greater risk of exposure…but how much fluid transfer were the parents expecting?)
The deleted gene is CCR, which provides a kind of latch between T cells of the immune system and antigens. Most humans have CCR, a small percentage do not, and they have a greater resistance to some specific pathogens. But are there trade-offs? Are they more susceptible to other pathogens, or does it generally weaken the immune response? We don’t know, but hey, maybe now there will be a bunch of kids in China who will have genetically engineered weaknesses!
The experimenter had rushed a paper on bioethics to publication before this conference where he announced his result. The paper states that this kind of experiment is unethical.
On Monday, He and his colleagues at Southern University of Science and Technology, in Shenzhen, published a set of draft ethical principles “to frame, guide, and restrict clinical applications that communities around the world can share and localize based on religious beliefs, culture, and public-health challenges.” Those principles included transparency and only performing the procedure when the risks are outweighed by serious medical need.
He was actively pursuing controversial human research long before writing up a scientific and moral code to guide it.“We’re currently assessing whether the omission was a matter of ill-management or ill-intent,” says Barrangou, who added that the journal is now conducting an audit to see if a retraction might be warranted. “It’s perplexing to see authors submit an ethical framework under which work should be done on the one hand, and then concurrently do something that directly contravenes at least two of five of their stated principles.”
It’s true. Patent dishonesty ought to be a good reason to pull a paper.
He appeared to anticipate the concerns his study could provoke. “I support gene editing for the treatment and prevention of disease,” He posted in November to the social media site WeChat, “but not for enhancement or improving I.Q., which is not beneficial to society.”
OK, I’ll bite. What genes for “improving IQ”? It’s easy to say you won’t do experiments on a gene that doesn’t exist, or involves modifying a very large number of mostly unidentified genes. I also don’t believe him. Of course improving intelligence would be beneficial to society — we try to do that all the time, it’s called education. If he had a target gene that was associated with greater intelligence, you know he’d be recruiting volunteers to do the study right now, which he’d carry out surreptitiously until he got a positive result that he could highlight at a major conference.
The lack of transparency while the experiment was ongoing is deeply troubling. If you don’t let people be aware of and monitor your potentially risky experiment, it’s too easy to literally bury (or cremate) results that you don’t like. It’s like p-hacking, where in this case the “p” stands for “people”.
This guy is a biophysicist and bioengineer. He is not qualified or trained in any way to assess ethical risks, but heck, we all know that the magic words “physicist” and “engineer” make one all-knowing, confident, and wise. I can only dream of having the degree of certainty that would allow me to publish a paper in a complex field which I know nothing about, and where my actual work flouts everything I say others should do. But then, I’m not a physicist.
I also have to add that this is not a particularly radical experiment. Crispr is now an established technique, and these sorts of experiments have been carried out in experimental animals. The only thing novel about it is that he rushed to execute an experimental technique, developed by other, more careful scientists, on a different experimental animal, human children. I expect there will be a day when gene editing on embryos is done to improve the quality of life for human beings, but that day doesn’t seem to be here yet, and reckless experiments don’t bring it any closer.