A friend of mine asked me this:
a few links with short articles on gene therapy/editing and especially CRISPR, and the ethics of gene therapy.
Does any one have some good suggestion for a thoughtful non-scientist curious about this issues?
That’s a book, what about an article?
This is a very brief statement from Dr. Francis Collins, but I think it does a good job of outlining the major ethical issues scientists are focused on:
That gets right to the heart of the issues. Is there adequate oversight? Is it necessary in this specific case? Do patients understand the risk? Do we even know what the risk level is? Those are the questions at the heart of the ethical debate within the scientific community.
Here is another article written by scientists for the general public:
I don’t really have anything to offer in terms of links, but last week @Troendle gave a nice intro to CRISPR and some of the bioethical considerations at a Center for Science & Faith faculty seminar last Wednesday on my campus. We had a variety of faculty and staff (mostly non-scientists) and they definitely wanted to know more. Many are very wary of this level of manipulation.
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That is a two-edged sword. If this technology does prove itself to be safe and effective I would hope that there would be reasonable and general acceptance. As an analogy, the public can sometimes overreact to the dangers of radioactivity because radioactivity is something they don’t fully understand and can’t see. If they took a counter with them on an airplane flight they would probably freak out.
The truly exciting part is CRISPR technology has the potential to cure genetic diseases, and many diseases beyond that. That’s amazing. We need to be honest about the potential health risks, possibilities of abuse, and the potential that this technology has.
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Has anyone else read that He’s technique was also flawed and that it resulted in mosaicism where some of the twins cells have the CCR5 knockout and some do not?
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Yeah, so that was where a lot of the discussion went, when would it be beneficial and when could it be a bad idea. Collins has talked about the potential ethical issues, for instance, of editing germ line cells without the consent of the person those cells may become. On one hand “consent” seems to be an important part of medical ethics, but also the benefits may be much higher in editing germ line cells.
I think most people came away with a sense of the potential power of CRISPR and a better appreciation for some of the ethical considerations.
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What about govt regulation?
Shouldn’t every gene editing treatment require approval of government bodies such as the FDA?
I’m sure it will @Ashwin_s.
Hope it does .
Self regulation sledom works in these scenarios.
The debates should not be about the ethics of gene editing. It should be on proper legislation to ensure its misuse is prevented and patients are protected.
Those policies are already in place:
It is worth noting that CRISPR isn’t the first gene editing technology to come around. Gene editing using adenoviruses has been an active area of research for a while now, and it is heavily regulated by the FDA for medical use.
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I agree proper legislation is necessary. But the reason that it is necessary is because there are ethical questions that need to be answered about gene editing. And those ethical discussions should guide the legislation.
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That’s one way of looking at it. The other way is to look at protecting the rights and interests of all parties involved. Especially the patients.
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Yes, but shouldn’t our rights be determined through ethics? I don’t think they are separate. Or at least I don’t think they should be.
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I am not denying that there are ethical implications. I am just pointing out what the Government/regulatory bodies priority should be… i.e Safety and protection of teh rights of the consumer.
This involves some ethical judgements, but also bypasses many ethical conundrums.For example, a group looking at legislation does not have to worry about whether Gene editing is intrinsically evil, immoral, sinful etc. All they have to do is ensure that people have the right to deny the treatment if compelled by their conscience.
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Safety and the protection of patients are some of the ethical considerations, but certainly not the only ones. Good legislation will necessarily be born out of a consideration of all ethical questions.
Interestingly, I think this is an area where the scientific community can play a leadership role. While some may think of science as amoral or keeping its distance from ethical questions, this is simply not the case. Due to abuses in the past, there has been an internal and massive push to incorporate ethics into the very foundation of how science is done. Scientific institutions heavily regulate themselves based on strong ethical guidelines and policies. I think legislators would be greatly helped by listening to the scientific community when it comes to future policies dealing with gene therapies.
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I am not sure this is advisable. The scientific community has already shown that it cannot be trusted with the experiments done on the babies in China.
No offence meant to individual scientists here. Every group has a minority that will not self regulate. The scientific community is no different.
Yes, expert advice from scientist would be invaluable. However any regulations would have to take advice from all the stakeholders … i.e consumers, elected representatives, hospitals, legal experts etc etc…
Why are you holding the whole scientific community responsible for the actions of a rogue scientist that the scientific community as a whole immediately denounced?
Scientists agree that there needs to be oversight. It is very important to make that clear. Of course this is true:
The scientific community, as we are seeing, entirely agrees with this.
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The scientific community was the first to condemn those experiments, and the scientists who carried out those experiments went around all of the policies and safeguards that have been put in place by the scientific community. You might as well say that our elected representatives shouldn’t make laws because people break them.
I completely agree that all stakeholders should be involved. The reason I am saying scientists should lead is due to their training in both ethics and science.