Lambert: It’s good to see an ethic emerging. It gives me confidence.
By Undark Contributing Editor Sara Talpos. Originally published on Undark.
Neurological disorders are one of the leading causes of death and disability worldwide. Conditions such as paralysis and aphasia affect the ability to understand and speak language and can be devastating for patients and their families. There has been significant investment in brain research, including the development of new technologies to treat some of the conditions, he said. Saskia HendricksJohn F. Kennedy, a bioethicist at the National Institutes of Health, says that while these technologies have the potential to improve people’s lives, they also raise many ethical questions.
Part of the reason, Hendrix says, is the unique nature of the brain: it’s “home to many functions that seem to be really important to us, including consciousness, thought, memory, emotion, perception, behavior, and probably identity.”
In June Essay Writing in the New England Journal of Medicine, Hendrix and co-author Christine Grady outlined some of the thorny ethical issues associated with brain research: What is the best way to protect the long-term interests of people who receive brain implants as part of clinical trials? As technology advances, Decoding thoughtsHow can researchers prevent violations of mental privacy, and how can they best prepare for the remote possibility that consciousness might one day emerge from research derived from human stem cells?
Hendricks spoke about the essay in a Zoom interview, and the conversation has been edited for length and clarity.
Undark: Your article focuses on three hypothetical cases where brain research raises ethical dilemmas. In the first case, a quadriplegic named Mr. P. takes part in a clinical trial and receives a brain implant. The implant restores his arm movement and improves his quality of life. But three years later, the implant stops working. The company declares bankruptcy, and replacement parts are no longer available. So what happens to Mr. P.?
Saskia Hendricks: Let me provide a bit of context. There are currently several ongoing studies into brain implants. These studies offer hope for patients with severe brain damage who have tried all existing treatments without success. And if these implants work, patients may naturally want them to remain and continue to function. In other cases, some brain implants may be too risky to simply be removed.
However, if you want to keep using your experimental implant – and therefore keep receiving its benefits – you need ongoing care. That could be new hardware like batteries, or it could just be monitoring to make sure your settings are correct. You also need ongoing care to mitigate the risks associated with existing implants.
We know that some former participants in brain implant studies experience challenges with continued access related to this experimental implant. For example, because the implant is so novel, only the surgeon who placed the implant may be willing to go back and change it if necessary. In that case, former study participants continue to rely on their original surgeon. What happens if the surgeon transfers or retires? As you can imagine, that can pose challenges.
In the case of battery replacement, some implants require it every 5 years. However, some patients have issues with who pays for this procedure and whether they can get the battery. It is not always paid for by health insurance companies. It depends on the implant and the case.
This article paints a relatively extreme scenario similar to the one you just described. Unfortunately, it is a hypothetical scenario, and one that we have not entirely made up. Over the past few years, there have been several cases reported in the media where patients have received experimental brain implants and companies have experienced situations like this. Closure Or for some reason the device can no longer be supported. Need for new hardware partsor something like that, and it was very difficult to solve.
In the United States, there is no legal requirement to hold professionals involved in research accountable. Given that there is no legal requirement at present, this is a question of ethics. When it comes to ethics, who is responsible for post-trial care? I think it always depends to some extent, because on the one hand, you have to balance the interests of former participants. But there is also a concern that if you set standards that hold companies, researchers, funders, or anyone else accountable, that could have a significant deterrent effect on whether clinical trials can be conducted, whether companies are willing to conduct trials, (or) whether institutions are willing to conduct trials.
In this article, we first argue that if a patient receives a brain implant, we believe that it is inappropriate in most cases to request removal of the implant, especially if there are no other treatments available that could help and ultimately benefit the patient. Patients should be able to keep their devices. Of course, there may be some exceptions, but in general, we believe that patients should be able to keep their devices. We make some more specific recommendations in the paper:
UD: The second hypothesis concerns women who are taking part in a study using brain imaging to reconstruct and read thoughts. This type of technology could ultimately Broca’s aphasiaHowever, concerns arise regarding the psychological privacy of research participants. Can you talk about these concerns?
SH: In this case, it’s very important to distinguish between what is currently possible and what may be possible in the future. For example, I don’t think it’s possible to read minds at the moment.
Most of these studies capture information from the motor cortex of the brain, which is the part of the brain involved in executing voluntary actions. For example, they ask patients to imagine writing a sentence, and see if the part of the brain that tells them to write a sentence can read and then decode the motor cortex to see if it can re-imagine the sentence they are trying to write. So unless the patient mentally commands themselves to write the sentence, the information is not captured.
It is very important to note that to achieve this, they had to collect over 16 hours of fMRI data from the individuals who participated in the study. Currently, researchers are studying the application of this decoder using more limited data from subjects who are trying to decode information.
If we took it a step further and it became possible to apply this type of decoder to data collected for a variety of purposes (and this is a really big “if”), I would start to be quite concerned about privacy.
For example, I would be concerned if other past research studies were able to recreate the silent speech produced by subjects during fMRI studies, and some of that data was available in the public archives. For example, I volunteered for a number of fMRI studies during my college years. I don’t know what my inner monologue was, but whatever it was, I would prefer it not be deciphered by others.
We’re still a few steps away from this scenario, but for now I think we need to think carefully about conservation — are there certain types of research that we shouldn’t try to do?
UD: The third hypothesis raises a surprising question: what would happen if evidence of consciousness or sentience were to emerge in organoids? Can you explain what brain organoids are, and why do some scientists believe that organoids could be conscious?
SH: Organoids are Pluripotent stem cells They are either induced pluripotent stem cells or embryonic pluripotent stem cells. resemble It’s the same as a fetal brain. And I emphasize this because it’s not exactly the same as a developing fetal brain. There are some similarities.
These models are critical to brain science because it is so difficult to study the living human brain, and they can help us better understand how the brain works, develops, functions, and potentially diseases. Current models still have important limitations in their size and complexity, as well as other scientific factors.
No scientist believes that current organoids have any capabilities that would particularly concern us, and scientists are divided on whether organoids will ever have these ethically significant properties: some believe it will never happen, while others believe it could happen in the future.
But even that group, at least some of them, would argue that even if consciousness were to emerge, it would be more like the level of consciousness of insects like grasshoppers, not a human-like level, which could conceivably have implications on how the organoids should be treated.
UD: In your paper you recommend guidelines for organoid research. Can you give us some examples?
SH: If organoids develop consciousness or perception or other relevant capabilities, such as the ability to feel pain, then it would be very important to recognize that, because then, maybe, we should start treating organoids differently. There are some scientific challenges to actually being able to measure these kinds of things. But one of the things we’ve recommended is to define checkpoints that can help researchers determine when they’ve crossed a line or when additional monitoring is needed.
Depending on the type of organoid research (including the type of stem cells derived), oversight may be somewhat limited at present, and we believe there may be cases in the future where increased oversight is needed.
Another element is around informed consent. Preliminary research suggests that at least some people have moral qualms about using their own cells to develop these kinds of organoids. So that raises the question of, for example, whether when we ask people for tissue, as part of the informed consent, we should state that all tissue may be used for this kind of research, and give people the opportunity to opt out. There’s an ongoing debate about what the standard for informed consent should be.
UD: From what you have seen, are brain researchers and device manufacturers giving much thought to the ethical implications of their research and products?
SH: I’ve seen a lot of researchers, institutional leaders, and companies that are very ethically conscientious. In terms of ethics, this is an emerging field. So it’s not always obvious how best to manage the challenges. And when you’re really on the front lines, it’s possible that stakeholders may overlook or miss ethical challenges, or miss situations that require rethinking, or things like that.
And for me, the integration of science and ethics in this field is very important.
