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More New Meds

Entry 1957, on 2018-12-26 at 16:08:47 (Rating 3, Science)

Earlier this year a Chinese medical researcher, He Jankui, announced that he had used CRISPR technology to modify the genetics of embryos during an IVF treatment. The genetic modification was to remove a gene which allowed the HIV virus to attach to cells. The father was HIV positive so this gave his children a chance to be free of AIDS.

I have heard a lot of condemnation towards this work, even though there is no reason to believe there were any negative consequences. In fact, the big hazard with CRISPR - the possibility that other genes were modified accidentally - has already been ruled out.

So what's the problem? This seems to be a positive step and an interesting demonstration of how this new technology can be used in real medicine, even though it is only being used for scientific research elsewhere. The problem is that there was little control over what was done. There was apparently no ethics approval, no authorisation from a recognised international medical organisation, and no significant pre-treatment trials or other rigorous testing.

Superficially it seems that most people think that this work was unethical, that proper procedures should have been followed, and that the researcher should be disciplined (I later heard that he had "disappeared", which is a bad sign in China). But I am tempted to suggest that many other people might think this was a good thing, because it might speed up the adoption of a useful technology and bypass a lot of possibly unnecessary bureaucracy.

As far as my opinion is concerned, I am somewhere in the middle. I think there are dangers in proceeding with the use of new technology too quickly, but I also think that progress is stifled by excessive bureaucracy (as it is in almost every area of human endeavour). So it is difficult to establish where the optimum balance is between caution and progress, but in some ways it is good that China is tipping the balance a bit more in the direction of progress.

It would be different if the decisions on how new discoveries could be used were made from an entirely scientific perspective by experts, but they aren't. Instead, they are made by progressional bureaucrats, who often have backgrounds in science or medicine, but are primarily motivated by management or political objectives instead. I accept that some of that is my opinion rather than established fact, but it is difficult to deny based on past decisions (such as those concerning the use of embryonic stem-cells).

Another possible reason for the criticism might be that some researchers are both worried about, and jealous of, the freedoms their Chinese colleagues get, which is ironic in itself. Maybe they are worried that the excessive bureaucracy in the Western World might allow China to get ahead of them.

There is also the legal risk element of these decisions. Everyone knows there is a significant risk of massive loss through law suits against companies who sell treatments which are later shown to cause harm. That could easily be stifling progress by making people act too conservatively.

Now look at this from a philosophical perspective, specifically through the lens of consequentialism. Are the consequences of this sort of treatment worth the risk in using them?

It seems to me that in most cases they are. If this treatment hadn't been performed what would have been the counter-factual for the children (twin girls, in this case)? Maybe the parents would have thought the risk was too great and they would not have been born at all, or maybe they might have had to face life battling AIDS. Either way, the current situation seems preferable. So a case could be made to say that the researcher took the most moral action.

And a similar argument could be made in regards to all new medical treatments. People die from diseases which might be cured by new treatments which haven't yet been through a full testing regime. Applying the consequentialist argument again: letting them die seems worse than almost any possible result from an experimental treatment, especially if the patient makes the decision to go ahead based on full knowledge.

The difference is, of course, that the children born after the current treatment didn't give permission, because the treatment is done at the single-cell stage of development. And it's even worse than that, because the treatment at that stage means all the cells in their bodies are affected, including their eggs, which means their children and all other future descendents are also affected.

But it's easy to over-think this and look for potentially bad results, without balancing that against potentially good ones. In fact, maybe it's best to forget about the "potentially" part and look at the actual consequences, as consequentialism would suggest.

And we could look at this statistically too. Even if a certain percentage of outcomes were bad, it might still be worth the risk to get the good ones too. After all, that is a standard part of medicine, where there is always a risk of a treatment not working or even possibly making a situation worse.

So, despite the widespread outrage and condemnation I have heard so much of in this case, I don't think I would agree. At the very least there should be a discussion on where the appropriate balance is between risk and progress, because that doesn't seem to be happening much now. Potentially it could greatly speed up the introduction of more new meds.

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Comment 1 (4976) by Derek Ramsey on 2018-12-28 at 11:33:37:

OJB said: "So what’s the problem?"

Accidents are the least of what can go wrong. The abuses of this technology will be intentional.

China is rolling out its national tracking system for financial transactions and travel (w/facial recognition). We expect speech suppression. Meanwhile, religious persecution has been ramped up. Those Christian wack-jobs talking about the "mark of the beast" (technology abuse) will witness it in China. It's not "if" but "when."

China will embrace genetic modifications and we will let it happen. There are people in the West who remember German eugenics, but not enough. We have already dehumanized life (abortion), attacked the family (easy divorce), and desensitized ourselves (sexual immorality). Quaint notions all.

Will we get to the point where society is made up of two classes, the higher modified and the lower unmodified ones? Maybe, maybe not. China certainly has the power to do so. It's already done so in the past with two classes of families: those with zero or one child and those with two or more. Even if it doesn't, it has no ethical standard that would say that such a thing is wrong. Keep in mind that the West praised China's one-child policy.

Genetic modification will, among other things, reinforce the preexisting notion in China that the disabled and infirm are lesser members of society not worthy of the same rights as others.

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Comment 2 (4977) by OJB on 2018-12-28 at 11:34:02:

Well that is the challenge of all new technologies, isn’t it? The two big upcoming technologies – artificial intelligence and genetic modification – both have two opposing aspects: opportunity and risk. I was not trying to suggest that all research should be uncontrolled, it is more about where the balance would be. I think China is probably a bit too free, but the West (mainly the US and Europe) is certainly too tightly controlled and bureaucratic. My hope is that progress being made in China will force the West to be a bit more open.

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