Lambert: It’s good to know that ethics are evolving. It gives confidence.
By Sara Talpos, contributing editor at Undark. Originally published in Undark.
Nervous system disorders are among the leading causes of death and disability worldwide. Conditions such as paralysis and aphasia, which affect the ability to understand and produce language, can be devastating for patients and families. A lot of money has been invested in brain research, including the development of new technologies to treat certain conditions, said Saskia Hendriks, a biologist at the US National Institutes of Health. This technology may improve lives, but it also raises many ethical issues.
That’s partly due to a unique brain structure, Hendriks said. “It is the seat of many activities that we think are really important to us, such as consciousness, thoughts, memories, feelings, ideas, actions, perhaps identity.”
In a June article in the New England Journal of Medicine, Hendriks and co-author, Christine Grady, posed some of the most difficult questions related to brain research: What is the best way to protect the long-term interests of recipients? brain tumors as part of a clinical trial? As technology gets better at interpreting thoughts, how can researchers avoid violations of intellectual privacy? And what is the best way to prepare for the possibility that consciousness may one day emerge from work derived from human cells?
Hendriks spoke about the article in an interview with Zoom. Our discussion is structured for length and clarity.
Black: Your piece focuses on three fictional examples where brain research raises ethical dilemmas. The first one is about a quadriplegic named Mr. P. who is enrolling in a clinical trial to receive a brain transplant. The implant allows him to move his arm and improve his quality of life. But after three years, the transplant stopped working. The company has announced that it is out of business and replacement parts are no longer available. As things stand today, what would happen to Mr. P.?
Saskia Hendriks: Let me give a little context. There are several ongoing studies involving brain tumors. These studies offer hope to patients with severe mental disorders who have tried all available treatments without success. And in cases where these implants work, patients may understandably want to keep them, and may want them to continue working. In some cases, some brain tumors may be too dangerous to remove.
However, if you are keeping an experimental implant – if you want to continue to benefit from it – you need ongoing care. That could be hardware, like a new battery; it may be a precaution to ensure that the settings are correct. You also need ongoing care to minimize the risks associated with existing implants.
We know that some former brain transplant participants experience challenges with continued access related to these experimental transplants. For example, an implant may be so novel that only the surgeon who implanted it is willing to go back and change it if necessary. In that case, the former participants in the study ended up relying on the original surgeon. What happens when a surgeon moves or retires? That can cause challenges, as you can imagine.
As for battery replacement: You may need them every five years – depending on installation. But some patients have challenges about who pays for the procedure and whether they have access to the battery. This is not necessarily health insurance. It depends on the transplant and the case.
The article represents the most extreme situation – the one you just described. Unfortunately, this is a hypothetical situation, but we did not do it completely, in the sense that there have been several examples over the years in the media where a patient received an experimental brain transplant and faced this type of situation. when the company has gone out of business or, for some reason, can no longer support the device. And then they ended up needing a new piece of hardware, or something like that, which was really hard to solve.
In the United States, there are no legal requirements that hold professionals involved in research accountable. So it’s about ethics, given that there are no legal requirements at this point. And in terms of ethics, who is responsible for post-test care? It always depends to some extent, I would say, on the case because it requires, on the one hand, balancing the interests of the former participants. But there is also concern that if we limit what we do with companies and investigators and funders and others who are responsible for it, this could have a significant impact on whether we are able to do trials, or whether companies are willing to do them. , [or whether] institutions are willing to make it happen.
In this article, we argue that firstly, if patients receive a brain transplant – and especially if they have no other treatment options that could help them and eventually benefit – we think it is wrong for them to want to be transplanted in most cases. They should be allowed to keep the device. Yes, there may be exceptions, but generally, we think they should keep the device. We make some specific recommendations in the paper.
D: The second hypothetical describes a woman in a study that uses brain imaging to reconstruct or study her thoughts. This type of technology can ultimately help people with Broca’s aphasiabut raises concerns about psychological privacy for research participants. Can you discuss your concerns?
SH: In this case, it is very important to distinguish between what is possible now and what may happen in the future. For example, I don’t think we can read minds yet.
Most of these studies capture information in the motor cortex of the brain. That is the part of the brain involved in making voluntary actions. So, for example, they might ask the patient to imagine writing a sentence, then they try to study the part of the brain that gives the command to write the sentence, and they try to see that by decoding the motor cortex, if they can think again of the sentence that the person is trying to write. So in other words, unless a person gives the command to write in his mind, he will not catch it.
It is really important to note that in order to do this, they had to collect 16 hours or more of fMRI data from the person who was involved in this study. Now, researchers are testing the use of this extractor with very limited data on the subject they are trying to decode information from.
If someone could take it one step further than that, and it happens to be able to use this kind of decoder on data collected for different purposes – and that’s a really big if – then I would start to worry a lot about privacy.
For example, if we were to be able to reconstruct the silent speech that people had while in an fMRI study for any other research study in the past, and some of this data is in public archives, that would worry me. As an example, in college, I volunteered for many fMRI studies. I don’t know what inner monologues I was having at the time, but I’d like others not to explain whatever it was.
We still have various steps in this situation. However, I think that for now, there is reason to think carefully about protection. And that means, are there certain types of research that we shouldn’t try to do?
D: A third hypothetical asks a shocking question: What should happen if evidence of consciousness or sentience emerges in organoids? Can you explain what a brain organoid is? And do some scientists believe that there is a potential for organoids to be conscious?
SH: Organoids are clusters of neural cells derived from pluripotent stem cells that can be either pluripotent stem cells or embryonic pluripotent stem cells. And these are groups of cells that can develop in such a way that similar in that of a child’s brain. I emphasize that because it is not really the same as the brain of a developing child. There are some similarities.
These models are really important in brain science because it is really difficult to study the human brain of a living person, and these models can help improve our understanding of how the brain works, its development, its function, and possible disease. There are still significant limitations to the current size and complexity and other scientific aspects of these species.
I haven’t heard of a single scientist who thinks that current organoids have those kinds of capabilities that we would be too concerned about. There is disagreement among scientists as to whether these types of behaviorally relevant structures may be able to evolve in organoids at some point in the future. Some scientists believe that will not happen; there are others who think it may happen sometime in the future.
However, even that group – at least some of them still argue that the level of, let’s say consciousness, even if it emerges, will be similar to the level of consciousness of an insect like a grasshopper, not like a human being. for, which may affect how you should treat said organoid.
DD: Your piece recommends guidelines for organoid research. Can you give some examples?
SH: If organoids develop consciousness or emotions or other important abilities like being able to feel pain, it will be very important to notice that because, arguably, we should start treating them differently. There are some scientific challenges, actually, in being able to measure these kinds of things. But one of the things we recommended is to try to define some checkpoints that can help researchers decide when a line is crossed or when more surveillance is needed.
Depending on the type of organoid being studied, including the type of stem cell it is derived from, the current oversight may be somewhat limited. So we think there may be situations in the future where more oversight is warranted.
An additional layer relates to informed consent. There are preliminary studies that suggest that at least some people feel uncomfortable, morally, about the use of their own cells to develop these types of organoids. And so that raises questions about, if we should specify, for example, as part of informed consent when we ask people for their tissues, if we specify that all your tissues may be used for this type of research and give people the opportunity to choose. outside? There are currently ongoing discussions about what should be the standards regarding informed consent.
D: From what you’ve seen, do brain researchers and device companies think enough about the ethical implications of their research and products?
SH: I have seen many honest researchers, leaders of institutions, companies. This is an emerging field in ethics. So it is not always clear what is the best way to handle the challenge. And sometimes, if you’re really at the forefront of it, it’s possible that the parties may be oblivious or miss the ethical challenges, or miss the context that needs to be considered, or something along those lines.
And for me, the integration of science and ethics in this field is very important.
Source link