Hyperfocus: The brain is the last frontier of privacy. And you’re the target.

Your smartwatch tracks your steps and your pulse. Soon, devices like it could track your brainwaves, and even tell if the wearer is neurodivergent.

Brain-monitoring wearables that purport to help with focus, sleep, and even ADHD are already being sold online. This is called “neurotechnology,” and it’s a fast-moving market with almost zero regulation. Stephen Damianos of the Neurorights Foundation joins us to unpack the potential promise — and dangers — of this emerging technology. We discuss the unique risks it poses for neurodivergent people, and why your brain data might be the most valuable, and least protected, information you own.

• Explore: The Neurorights Foundation

• Watch: Is “ring of fire” ADHD real?

Stephen Damianos: I don't think I'm being alarmist to say that this is a potentially population-level risk unfolding under our noses.

Rae Jacobson: It is rare on this podcast that we cover topics that sound straight out of science fiction. But today we're exploring a tech future that, without guardrails, could careen into the world of George Orwell's "1984." And we're looking at why that future is more dangerous for neurodivergent people and much, much closer than we think.

I'm talking about neurotechnology, devices that collect data from our brains. These are things that already exist — you can buy them on Amazon — and the technology is improving all the time.

Stephen: If there were a wearable device that actually could help me immediately sit down and access flow state, that would be really compelling to me. Now, is it so compelling that we can forgive the commodification of the human brain?

Rae: My guest today is Stephen Damianos, the executive director of the NeuroRights Foundation. They're a nonprofit working to ensure that this tech grows safely and ethically and, importantly, that our brain data is protected and not sold off to the highest bidder.

I wanted to talk to him because this tech is often marketed directly to neurodivergent people. And though there may be benefits, there are also massive unique threats, especially to the neurodivergent community. So today on "Hyperfocus," Stephen Damianos and the totally real, non-fiction world of neurotechnology.

Rae: So you do something that I am obsessed with, fascinated by, and that opens up a world of terror. And I really, really am so glad you're here to both frighten and also calm me.

Stephen: Hopefully more calm than terror will come from this. We'll see. So the world that I work in is called neurotechnology. Neurotechnology refers to any device that is capable of doing one or both of two things. If it can monitor the brain and the nervous system, it's neurotechnology. And if it can manipulate or change the brain and the nervous system.

Rae: You said you were going to calm me.

Stephen: I said I hope. And so neurotechnologies are not new. They've existed in medical settings for decades, supporting Parkinson's, epilepsy, stroke rehabilitation, and more. But what is new is that for the first first time in human history, we're seeing neurotechnologies move beyond medical and research settings into everyday life. Into schools, workplaces — you can buy them on Amazon. It's very much the first time of a kind of unprecedented influence over and insight into the human brain.

Rae: When you hear the term neurotechnology, you might be imagining something futuristic and invasive, like a device implanted in the brain. Tech like that does exist and is getting pretty powerful. But that technology is, so far anyway, confined to medical settings. You can't just buy it on the internet.

The tech that Stephen's most concerned about at the moment is actually non-invasive. Think wearable devices like smartwatches. But instead of, or I guess in addition to, measuring your step count, they monitor your brain waves.

Stephen: Apple has a patent for AirPods that have brain-scanning technology in them.

Rae: Now we're back to scary.

Stephen: Now we're back to scary. There are a number of companies that are working on over-ear headphones as well that track your focus, your levels of attention, tell you when you have cognitive overload, things like this. There are wristbands — Meta has a wristband that they have already actually brought to the market. Nike is investing heavily in this space as well. So we're thinking about a lot of different wearable products. Many of them are kind of in the sleep and focus or emotional regulation world. Others are kind of in the bodily performance world for guided meditation.

(03:00) The shift from medical to consumer neurotechnology and the resulting gap in privacy protections.

Rae: Okay. So there are all these things that are coming into personal use that previously were really just something that would exist in the medical world, which I assume also has privacy associated with it, controls associated with it. When we're buying them on Amazon or just at the store, I would assume that there's not as much control over what they read about us, where that goes, who has it, what they do with it. And that's where your organization comes in, am I right?

Stephen: Precisely that. The entire space rests upon a gaping loophole, which is that in medical settings and research settings, there are robust privacy protections under HIPAA, for example. And so if you undergo deep brain stimulation for Parkinson's, as one example, you probably aren't that worried about where your brain scan is going to go and how it could or couldn't leave the hospital system.

Outside of medical settings, even if the technology uses medical-grade technology, all of those protections fall away. In most settings in the world, this is an entirely 100% unregulated space in terms of what can happen with the data and what the devices can and can't do. And I will note — these devices, when appropriately safeguarded and when used in the right way, can meaningfully benefit humanity. It's not only doom and gloom, but the risks are extremely concerning and existential.

Rae: What are the benefits of these devices? Why would someone, Stephen, why would someone even begin to get involved with this? There have to be good reasons.

Stephen: And there are. Humans are cognitive creatures. Every element of who we are, what we believe, our personalities, that all comes from the brain. It is the center of what it means to be human. Which means that if it's not working as well as you want it to, or if there's any alteration or change you want to make to it, then you know more about how to have a tailored intervention focused on you specifically.

So that interests a lot of people. There's also a lot of interest in kind of what it could mean to democratize access to healthcare and mental healthcare in particular and have at-home wearable solutions to that. There are many reasons that it could be pro-social and beneficial for humanity to have us better understand how the human brain works and have interventions that help people reach their full potential.

Rae: I'm wondering specifically for people who are neurodivergent or from the disability community if these things have potentially really exciting applications and also, conversely, maybe greater risks.

Stephen: Many of the companies explicitly speak to those communities as a consumer base and say, for example, our products will help increase focus or will help with cognition. Some of them even say, for example, for people with ADHD, we will help you train your brain to respond and react in certain ways equal to or better than a pharmacological intervention.

Rae: What is the grounds for saying that?

Stephen: This is a real concern in the neurotechnology space because currently there's no real standard or need for companies to evidence their products or their claims in a specific way. It's really messy and uncertain. And these companies all the time are saying things like sleep better and wake up feeling rested, or at-home treatment for depression, or mitigate ADHD symptoms. And there's no real way for a consumer for whom that might be really beneficial to know if that is actually going to do that thing or if the company is just going to amass enormous datasets of their most sensitive information and commercialize it.

(07:53) How AI and brain scans can decode sensitive personal information and even thoughts.

Rae: So here's the billion-dollar question. What sort of data could these companies be amassing? And while a lot of this technology is still in its infancy, brain scans in research settings are getting better all the time.

Stephen: Already, when you apply AI algorithms to a brain scan, for example, you are able to decode and detect markers of cognitive decline, ADHD, various mental health disorders or traumas, information about physical health, potentially even sexuality, political opinions. And researchers are working more and more on the ability to decode thought to text.

The idea that it is becoming for the first time possible to actually string together what users were thinking while wearing the devices. This already exists with invasive technology, so with an implantable brain-computer interface. That works at a much higher rate. There's still a lot of work to go with the wearable devices, but that is more quickly becoming a reality.

Rae: Look, I don't want to downplay the potential benefits here. Like Stephen said, some of these devices could be exciting and promising. We're not there yet, but this tech is coming. So it's worth thinking about both the benefits and concerns. And to be clear, there are huge concerns. Because though a lot of this sounds a little sci-fi, one thing that's very easy to imagine is a company selling the data it gathers. And if it does, how will that data be used?

And what about choice? If this type of tech becomes more embedded in the workplace, will you be able to opt out or will using neurotech become, say, a job requirement?

Stephen: Some people say, well, maybe for some high-risk workplaces — like if you're a surgeon, or if you are working in a control tower at an airport, or if you're a long-haul truck driver who could nod off and veer into a lane and take out an entire family — because there could be catastrophic effects, it is therefore allowable for us to say that person must undergo that type of monitoring.

But there are several known cases around the world already of neuromonitoring in workplaces, most notably in some factories in China and also in schools in China where students were required to wear headsets that track their levels of focus and kind of visualize that on a screen. And then the information about who was most and least focused was shared with their parents, which led to disciplinary action for those who were not focused or not as focused. And that's just one case and one that we know about.

Rae: That is genuinely one of the most — like if someone were to write an ADHD dystopian horror novel, I feel like you just told me the plot.

Stephen: That wouldn't make you happy, right? I mean, it's really concerning and not a leap of the imagination.

Rae: I hear a lot, and you can tell me if this is correct, about AI companies that are very interested in neurotechnology. Why are they so interested in this?

Stephen: They are. It depends on who you talk to. I know a lot of founders and CEOs who are interested in and who pour money into the neurotechnology space because of lived experience with neurological disorders or chronic mental health challenges. They're people who have launched these companies and said, you know, my father, I lost him to Parkinson's.

I actually met someone a few months ago who was suffering from extremely intense suicidal ideation and really did not find anything that was working for him until he used a wearable neurotechnology device that uses something called neurofeedback where you kind of train your brain in a certain way. And he says that that saved his life. I think there's another crowd that understands that this is the most revealing and therefore lucrative type of data that can exist about someone.

And we are living in a world where every element of our privacy is just being decimated in front of us. And I think the human brain is the last frontier of privacy.

(13:50) The lack of standards and the risks of commercializing neurodata in the workplace and insurance.

Rae: One of the things that I was curious about when you said that you know some founders and CEOs who have come to this because they really see it as a thing with potential to be incredibly useful. And in the examples that you gave — depression, neurological conditions — I do see that. It does seem like it could have great value.

The flip side of that for neurodivergent people is we know that AI, when it's built, has a lot of bias. There is frequently and documented bias against neurodivergent people and people with disabilities. And so I'm curious how that plays into the development of this technology from that standpoint.

Stephen: In most cases, it probably doesn't, by which I mean we're finding time and time again that neurodivergent communities are not given a seat at the table of development or of governance down the line. Right? So we've seen this elsewhere. And so the same biases that are entrenched in other settings just cement here.

There are questions about whose data are the devices trained on? What type of brain do they consider normal? And especially if these devices exist to give you feedback on how your brain is working and to try and nudge you or train your brain into a different or better way of being, that could be really concerning, right?

Rae: This is kind of what makes me most anxious about this — I should say one of the things that makes me most anxious — is what is the baseline against which we're being adjusted? I'm not necessarily comfortable with a technology company or anyone else deciding that.

Stephen: Yeah. And I think what's challenging here is that in a medical setting, you have a clinical duty of care and a relationship between a patient and a medical provider. And here the relationship is — it's a commercial relationship driven by onward engagement with the product. So it's a great question of who is deciding. And I think the answer is, how would we know? It's a total black box.

Part of what's scary about neural data as well is, if I post something on Instagram, for example, I know what I posted and I made the decision to do so. With neural data, if a company were to take a brain scan from me, I would have no idea what they're able to access from it today or in the future. Because brain scans grow in sensitivity over time as neural datasets grow and as AI becomes more sophisticated as well. So what you can decode from a brain scan today is only a fraction of what you can decode in the future. And so you don't actually know what you're handing over to the company, which is especially concerning given that most of them can just sell and share it with third — party actors as well. And so what are they sharing and selling? It's very hard for the consumer to meaningfully understand that, especially at this early point in the industry.

Rae: What is the marketplace for neurodata like? Like, there's clearly something to be bought here. And to your point about people are passing down to third parties, people are using this data how? I'm genuinely curious. Where does this go? What does it look like if somebody gets a hold of it? What's the worst — case scenario there?

Stephen: So in 2024, the NeuroRights Foundation did a report looking at 30 neurotech companies and products that are already on the market. And the privacy policies that everyone pretends to read through, we actually went through and carefully read through them and analyzed them and didn't love what we found. But essentially, something like 96% of the companies had full unfettered access to the data. Very few of the companies actually provided meaningful limitations or information about what kind of data they collect and what they could or couldn't do with it.

What that practically means for me or for you, for someone with the device — it means that maybe that finds its way to the person at the company where you've just sent in a job application and you would otherwise be the top applicant, and now for some reason you haven't gotten the job. Maybe that finds its way to your insurance provider, leading to a spike in your insurance premium because the device that you were using to sleep better has found that you have a higher propensity for addiction or that you — whatever it may be.

And so it's really about how these inferences and how the data about you travels. And the scale of harm they range from the general privacy harms all the way to the fact that in almost all of the companies, the data could be shared with law enforcement actors as well. And so, especially in this world we're living in now, I think it's important to talk about privacy and also talk about surveillance. And I do think there is a world in which, if we don't act carefully and proactively, this leads to a surveillance tool at scale unlike any we have known before.

Rae: So we're just going with the terrifying stuff, we're just completely bypassed calm?

Stephen: You know, I'm answering your questions.

Rae: I am curious, with all of this and the surveillance piece in mind, and we do hear a lot from this narrative that has value and can be true about how being neurodivergent or thinking differently, coming from the disability community, can be a superpower. And it can be an incredible thing and people want to recruit neurodivergent employees and all this different stuff, right?

There is a very prominent, very vocal flip side, which we see from a lot of quadrants, that difference is really only valuable if it can be commodified. Unless you're somebody who's going to come in and we can applaud your neurodivergence in our workplace or in our on our group or wherever it is, if it's not something that they can see as having a capitalist good, it's going to be something that is going to hold the company back. That surveillance system becomes something that is increasingly defining who has value and who does not. Even within neurodivergent communities. It's not just neurotypical versus neurodivergent, but it's who's valuable and who isn't, who do we want and who do we not care about.

Stephen: Yeah. And as I mentioned at the beginning, neurotechnology can monitor brain activity, but it also can manipulate and change brain activity. And I've spoken with some members of the disability communities who say, actually, I would like to alter the way that I think. And there are others who say, actually, no, I love this about myself. And what's concerning is that that decision, which should only ever come from the person, might come from a company or societally.

To your point about the question of difference, I think we are in a moment of shrinking difference and where there are many political and social pressures that are driving sameness. It's something wonderful if you are a political actor who wants to have more control over a populace, I would say. More sameness and less independent thought is a wonderful thing if you want control. There is great promise that comes with this technology and great peril as well. And so we really just want to get it right. And I like to say that we don't think about neurotechnology like cigarettes. We think about neurotechnology like cars. And cars are wonderful and need seatbelts. And it's just a matter of getting it right and doing it safely so that we can actually benefit from it and get where we need to go.

(19:14) Progress in legislation to protect brain data and the need for public awareness.

Rae: In the end, it kind of comes to larger policy. And I know you guys work on that. Like what is happening with that? Where are we now? You said we're kind of woefully behind. How behind and how are we catching up? Because I'd really like to.

Stephen: We're behind, but the ball is moving.

Rae: This is the first calming thing you've said this whole time.

Stephen: I know. We should just end it right here. And we can all feel good about ourselves. But no, we shouldn't end it right here because there's really exciting momentum building. At the NeuroRights Foundation, we've been working with various lawmakers and policymakers around the world to start socializing these issues and making them a priority. And a number of years ago, actually, we worked to pass the first laws in U.S. history that protect consumers from the exploitation of their brain data.

So those passed in first in Colorado was the first state, followed by California and then Montana. And we're extremely proud that that was a bipartisan mix. And since then, various other states — Vermont passed protections and there are a number of other states as well that have them in the works. Canada earlier this year became the first country in the world to pass a full federal protection. So it's moving. It's not where it needs to be yet and these are narrowly tailored privacy protections and there's a lot of work to be done, but the ball is rolling.

Rae: That is encouraging. And it does make me feel like, I guess maybe my question of like what can we do, like do I not buy this brain scan machine from Amazon, is maybe not the right question. The question is really how can people get involved and advocate for their own privacy?

Stephen: This technology is so close to being deeply embedded in society, and almost no one has even heard of it. Which reminds me of when ChatGPT and Claude and similar tools just burst onto the scene. And if you talk to technologists, they had been studying and reading about AI for years. But the general public had no awareness of it. And then almost overnight, it just became part of our lives.

And I really see and anticipate a similar dynamic here. And so there's such a strong feeling that we dropped the ball with social media, we dropped the ball with AI. And so my appeal is just, let's not do that again. And I think that involves raising awareness around it, it involves bringing funding to the space, and it also involves really educating the general public to say, actually, you have rights over your brain. Over how it works, over what it thinks, over the person that you are, over the person that you want to be. And that is core to what it means to be human and that is and must remain unchanged.

Rae: Stephen Damianos, you have been a terrific guest and I will not sleep tonight. Thank you for coming on the show.

Stephen: My pleasure. Thank you very much.

Rae: Thank you so much to Stephen for coming on the show. If you want to learn more about the NeuroRights Foundation, we'll have links in the show notes. And if you want to learn more about how brain scans are being used to diagnose or not diagnose ADHD, check out our episode called "Is Ring of Fire ADHD Real?".

Thanks so much for listening. See you in two weeks.

"Hyperfocus" is hosted by me, Rae Jacobson. Our producer is Cody Nelson and Anna Rothschild is our senior podcast producer. Julie Subrin helps with booking. Our music comes from Blue Dot Sessions, our research correspondent is Dr. KJ Wynne. Our associate director of content development is Calvin Knie. Briana Berry is our production director and Neal Drumming is our editorial director. If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to hyperfocus@understood.org.

This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson. Understood.org is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. If you want to help us continue this work, donate at Understood.org/give.