Ethical questions abound if humans are wired to machines

[00:00:00] Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith. The idea of connecting human brains with computers is not so futuristic anymore. The biotech company Neuralink, is recruiting people willing to have a wireless implantable brain computer interface surgically implanted as part of their first in human clinical trial. Today we'll discuss the ethical considerations with my guest, Dr. Syd Johnson. She's an associate professor of bioethics and humanities at Upstate. Welcome back to "The Informed Patient," Dr. Johnson.

[00:00:42] L. Syd Johnson, PhD: Thank you.

[00:00:44] Host Amber Smith: A brain computer interface used to seem far off, but now it feels like we're on the cusp of a neuro technological revolution. The US Food and Drug Administration recently gave the green light to Neuralink's clinical trial. People with paralysis from cervical spine injuries or ALS (amyotrophic lateral sclerosis) can volunteer for the study. Can you tell us a little about the history and current uses of these devices?

[00:01:09] L. Syd Johnson, PhD: Sure.

Brain implants are currently being used to treat a variety of neurological and psychiatric conditions, including depression, Parkinson's, essential tremors, disorders of consciousness, pain, and epilepsy. We have existing devices, which are called neuroprosthetics, and those are things like cochlear implants and retinal implants that can help people hear or see by sort of sending signals into the relevant areas of their brains. Although at present, the resolution of those devices is fairly low. They don't really restore what we might think of as typical vision or hearing.

Brain computer interfaces, or BCIs, are devices that can enable people to control an external device or a machine using signals from their brain. Those can be either wearable or internal devices. People are currently using experimental BCIs to communicate by, for example, spelling words on a computer screen. Stephen Hawking was a famous example of someone who used a BCI to speak after he lost his ability to speak verbally to ALS.

The devices have also been used to control robotic limbs, which might be useful for someone with paralysis, for example, or who has lost a limb. They can be used to help someone control a motorized wheelchair. And that kind of in innovation can enhance the lives of people with disabilities by increasing their mobility or increasing their ability to communicate and be out in the world.

This research has actually been going on for quite a long time, since the 1970s, when experiments began with both the wearable and the implantable BCIs. But there are currently only a few dozen living people in the world who have one. And they're all currently experimental.

One thing that's important to remember about these devices is that they require really extensive and time consuming training on the part of the user. They have to be able to consistently control and produce brain signals that the BCI will recognize. So we are pretty far away from any kind of sort of general mind reading capability or general use device. Every person's brain signals are unique, and there's no plug and play device. This is not like buying a new iPhone. And I don't think it ever will be.

Patients who participate in this kind of research often report that it is really time consuming and physically and mentally taxing for them to do it.

[00:04:04] Host Amber Smith: If I understand correctly, this Neuralink is meant to enable people who are paralyzed to control external devices with their thoughts. So if we were able to get that to work, would that be a good thing to add to our society?

[00:04:22] L. Syd Johnson, PhD: Well, I think that, as I said, those kinds of innovations could really assist people with disabilities by increasing their ability to participate in the world, to communicate, increasing their mobility. It's also really important though, that we actually ask the affected people what would be useful for them and what would be helpful to them rather than making those decisions for them.

There are a lot of things that we could, as a society, as a world, do to enhance accessibility and inclusion for disabled persons, and we don't currently do those things. Things that wouldn't require implanting a device in their brain or altering their bodies in some ways, right? Things we should fix, that would make the world more accessible, that would make good jobs in healthcare and all the other things many of us take for granted, more accessible to disabled persons.

And I think we actually should fix those things now, rather than wait for some sci-fi future in which we could alter that person and make them fit the world the way it is.

[00:05:34] Host Amber Smith: At an international conference this past summer, UNESCO, the United Nations Educational, Scientific and Cultural Organization, and leaders and top experts in neurotechnology agreed that a comprehensive governance framework is needed to harness the potential and address the risks that are presented by brain computer interfaces. What do you see as the potential?

[00:05:59] L. Syd Johnson, PhD: I think there are a number of potential benefits that these types of devices might have, but I think there are also a number of potential risks that are involved. And, those risks vary a lot from risks specifically to individuals, to different populations of people.

One of the things to keep in mind here, though, is that these devices are nowhere near ready for primetime right now. We're nowhere near sort of generalized use of these or widespread use of these. And I think the biggest impacts of these we would see if, for example, lots and lots of people had these, but these are going to be very expensive devices to have. It's pretty invasive to have an implant in your brain. And I don't think that the world overall is going to see benefits from having this technology developed.

There are still large parts of the world where people don't have access to the most basic healthcare or food or clean water, and those people will not benefit from something like this. It's more likely to be the same people who currently benefit from, from high tech innovations, which is wealthy people and wealthy nations.

[00:07:18] Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith, and I'm talking with Dr. Syd Johnson from Upstate's department of bioethics and humanities about brain computer interfaces.

So let's talk a little bit more about the risks. How might society or democracy be threatened by BCI?

[00:07:40] L. Syd Johnson, PhD: Well, as I said, we're very far from widespread use of these devices. Currently there's only a few dozen people in the entire world who have an experimental BCI. The use of other sort of neuroprosthetics is larger. The use of these therapeutic devices, like deep brain implants is also greater than that.

I don't think there are a lot of realistic concerns about threats to society or to democracy in the near future. In the far future, we might see that if these devices were commonly used, but again, I don't think that's going to happen.

It wouldn't be inexpensive to do this, and the world in which people might start using this is a world in which the wealthy have access to, maybe, customized brain implants. They would have the same advantages and power in that world as they have in the world we live in right now.

[00:08:43] Host Amber Smith: What about privacy and autonomy and freedom of thought? Would that go away?

[00:08:50] L. Syd Johnson, PhD: Privacy is a real concern right now with any device that collects brain data. Neuralink or any other corporation that might develop one of these devices would have access to an enormous amount of a subject's brain data. What would they plan to do with that? Will they record it? Will they keep it? How will they protect user privacy? Would they turn that data over to law enforcement? Would they sell it to advertisers? We've all seen how our social media activity can fuel the sort of focused advertising right now. And that is just through our ordinary activity on Facebook or Instagram or places like that. But having access to people's brain data has the potential to be misused.

The Neuralink device also is intended to connect someone's brain to a phone or a computer using Bluetooth, and we should be worried about whether that connection could be hacked. One reason to hack it would be to gain access to their brain data. Patients who have brain implants right now that record their brain activity -- so patients, for example, with deep brain stimulators -- have expressed concerns about whether their brain data might reveal things about their lives that they would prefer to keep private things like their sexual activity.

Another reason to be concerned with hacking is the potential to gain control of that implant. We've actually already seen this happen with implanted cardiac pacemakers and defibrillators that are vulnerable to hacking, manipulation and remote reprogramming. So you can only imagine the harm that would cause to someone whose health and their safety depend on that device.

If someone got access to your brain implant, it's not so much that they'll be able to control your thoughts or control your mind, but rather that they might be able to control whatever devices you're connected to with that implant. For someone who's dependent on that device, for example, to communicate or to do their job, that loss of control could be a really devastating interference with their privacy and their autonomy and their agency.

[00:11:12] Host Amber Smith: Would people with implants have advantage over those without, and do you think this could change the definition of what it means to be human?

[00:11:22] L. Syd Johnson, PhD: I think there's been a lot of chatter about the possibility that we might enhance ordinary human abilities by using these implants. That is actually one of the things that Elon Musk has talked about doing with Neuralink is to augment human abilities to allow users to hear frequencies and see wavelengths that are beyond current and normal human limits, or do things like stream music right into their brains or use their BCI for gaming or for faster communication. You know, very sci-fi stuff that they're talking about here.

He's also talked about his own fears about artificial intelligence overtaking humans as one of the reasons to develop BCI. So he thinks that this sort of merger of human and AI through Neuralink is something that needs to be done to protect us, right? He's sort of said, if you can't beat them, join them. That's Neuron's mission statement. The technology right now is very, very far from having that kind of impact or ability and very far from being able to enhance typical human activities or abilities. So I don't think it's going to change what it means to be human.

[00:12:46] Host Amber Smith: Well, whether to have a brain computer interface implanted in your brain as part of a study seems like it'd be a huge decision for someone. What would you suggest a person consider before signing up for a trial like that?

[00:13:01] L. Syd Johnson, PhD: There are a lot of risks to physical safety, including brain damage. The surgery to implant a brain device is pretty invasive. Anytime you are poking around in someone's brain, there are potential risks there, and that can be risky for patients. There are the usual sorts of risks of infection and rejection of a device.

If scar tissue builds up around an implant, it can actually interfere with the signals that you get from that implant For experimental brain implants -- and as I said, we already have quite a bit of experience with these -- there are also a lot of concerns about what happens to the patient after the clinical trial is over. And this has been a long standing concern among scientists, among patients, patient advocates, and ethicists who are thinking about the use of these implants.

In some cases, patients have been genuinely helped by experimental brain implants, but when the research is over, they may lose access to the device or lose the ability to have that device maintained or replaced, especially if the device manufacturer is no longer interested in pursuing further development or the commercial use of these devices. These are fairly niche devices. They're expensive, but I don't think there's a lot of money that could be made. There's not a huge commercial potential here. So it's very possible to have patients be somewhat abandoned once the research phase is over.

If you think about what happens when your smartphone gets several generations old, there are no more upgrades. You can't run apps anymore. It slows down. It becomes more vulnerable to security flaws. Imagine that happens to your brain device because the manufacturer decided it wasn't profitable to maintain it or upgrade it. Implanted electrodes and wires can also degrade and break inside the body, so there's potential for long-term health risks to that device user as well. If the device doesn't work, if it's now actually causing harm to the subject, who's going to be responsible for removing it and for mitigating that harm?

When the clinical trial is over, are they going to be on their own? Will there be a brain surgeon anywhere who'd be willing to touch that foreign device, a device they don't know anything about that's in someone's brain that that person wants to remove?

[00:15:41] Host Amber Smith: At this point then, what are the potential benefits of participating in a trial like the Neuralink trial?

[00:15:49] L. Syd Johnson, PhD: I would honestly say that there are no benefits. Promises and the hype that they're making about what their devices might be able to do are pretty far removed from reality at this point. Being able to restore full body movement to someone with paralysis, for example.

A brain implant is not going to to stop or reverse ALS. ALS is a terminal condition, unfortunately, for those people. A brain implant would not cure that. So one of the concerns here is that while we are sort of using these patients who have genuine medical needs to test out these devices -- devices that some people hope are going to be widely used, we should be concerned that they are exploiting this patient population, in order to create something that really isn't specifically for that patient population at all.

[00:16:55] Host Amber Smith: Well, there's a lot to think about with this then.

[00:16:58] L. Syd Johnson, PhD: There is indeed.

[00:16:59] Host Amber Smith: Thank you so much for your time. I appreciate it.

[00:17:02] L. Syd Johnson, PhD: Thank you very much. It was a pleasure.

[00:17:05] Host Amber Smith: My guest has been Dr. Syd Johnson, an associate professor of bioethics and humanities at Upstate. "The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe. Find our archive of previous episodes at upstate.edu/informed. If you enjoyed this episode, please tell a friend to listen too, and you can rate and review "The Informed Patient" podcast on Spotify, Apple, YouTube, or wherever you tune in. This is your host, Amber Smith, thanking you for listening.