Neuroprivacy as a Basic Human Right

A man with the shades drawn to cover his head, creating privacy.
Phillip Toledano / Trunk Archive

New braintech can capture a vast amount of personal data. It’s time to think about how yours will be protected.

The life of the mind is not as private as it used to be. Late last year, Chile’s parliament voted unanimously to adopt a new bill that enshrined “neuro-rights” for the country’s citizens by affording neuronal data the same status as donated organs, which are illegal to traffic or manipulate under the country’s constitution. This bill, the first of its kind anywhere in the world, could foreshadow a coming policy debate in the United States and elsewhere to tackle perhaps the most significant privacy and human rights question to arise since the dawn of the internet.

Functional neuroimaging was developed in the early 1990s, and now we have reached the point where researchers can decode the brain activity associated with certain mental states, allowing them to reconstruct what a person is seeing or what choice they are about to make with unprecedented precision. Other technological advances enable them to actually rewrite brain activity, allowing implanted brain electrodes to send pulses that alleviate the symptoms of disorders such as Parkinson’s disease, enable paraplegics to control robotic prosthetic limbs, and perform many other amazing feats.

Until recently, neurotechnology was limited to laboratory and clinical use. In the past decade, however, there has been an enormous growth in “do-it-yourself” brain stimulation devices, and the market for these direct-to-consumer products is projected to continue growing. The availability and use of neurotechnology for experimental and medical use will also increase dramatically in years to come. Various research groups are developing portable brain scanners, for example, and implants that can record and manipulate brain signals in ever more sophisticated ways. The current state of the art for animal experiments sees researchers creating and erasing memories in the brains of mice, or manipulating their decisions to turn left or right in a maze, with pulses of laser light. 

The increasing use of these devices in people will inevitably generate vast amounts of neurological data. And while this technology does not—and may never—amount to actual “mind reading,” some of the data produced by it will by its very nature be the most highly sensitive, personal medical information. These advances therefore raise major concerns regarding privacy and cognitive liberty in particular. Who will have access to this information? How might it be used? And could it eventually be used to change a person’s mental states against their will or infer their preferences for some cynical marketing purpose?   

Coming Soon to a Brain Near You

Magnetic resonance imaging (MRI) of the brain is extremely useful both clinically and experimentally. In the clinic, structural MRI is used widely to visualize brain anatomy, where it can aid diagnosis by identifying pathologies associated with neurological diseases, and help doctors precisely define the margins of a tumor prior to neurosurgery. Functional MRI is widely used in the lab to detect changes in cerebral blood flow, which serves as a proxy for brain activity, the assumption being that active brain regions require more energy and will therefore “light up” during a given mental task or behaviour. 

But typical MRI scanners are big, bulky, and hugely expensive instruments that can fill an entire room with their cylindrical donuts containing large superconducting electromagnets supercooled with liquefied gases and capable of generating magnetic fields many thousands of times stronger than the Earth’s own magnetic field. This infrastructure places the large, expensive scanners completely out of reach for anyone not within traveling distance of a machine, including the hundreds of millions of people in low-income countries.  

Laboratory conditions are extremely artificial and far from ideal for studying the relationship between brain activity and behavior.

This is now beginning to change, with the development of smaller scanners with lower running costs. Researchers at MIT, Harvard, and Massachusetts General Hospital have collaborated to develop a prototype of a portable, low-cost MRI scanner that does not require cooling and can be powered from a standard wall outlet. The main components of the device are contained within a 56-cm-diameter cylindrical magnet weighing 122 kilograms (about 270 pounds). While this prototype is still relatively large, it can be mounted onto a trolley and rolled into an ambulance. 

Advances like this promise to make hospital MRI technology more accessible to far greater numbers of people, including those living in remote, rural, and poor regions. 

Portable MRIs also promise to dramatically increase our understanding of the human mind by bringing brain scanning one step closer to real life. Laboratory conditions are extremely artificial and far from ideal for studying the relationship between brain activity and behavior. At some point in the future, portable MRI machines may allow for the recording of brain activity in people as they move and behave in natural environments. Other technologies have already gotten there. Nanthia Suthana and her colleagues at UCLA’s Laboratory of Neuromodulation & Neuroimaging recently described a wireless programmable device for simultaneous recording and stimulation of brain activity in freely moving humans. This unique device is designed for use in a small population of neurosurgical patients who already have electrodes implanted in their brains to detect uncontrollable epileptic seizures, of which there are some 2,000. The UCLA device allows for the remote control of these implants, and their synchronization with wearables that record heart rate, eye movements, and other biometrics. It can also be used alongside augmented and virtual reality systems. 

“We’re also working with some patients who have electrodes implanted in areas of the frontal cortex that are crucial for emotional memories,” says Suthana. “There are even patients being implanted in reward areas. A lot of folks have reached out to me for collaborations, [and] hopefully we’ll see a bunch of these studies in the next 10 years.” 

The number of people able to volunteer for such studies will increase in years to come. Currently, some 200,000 people with Parkinson’s disease have been successfully treated with a technique called deep brain stimulation (DBS), which involves long-term implantation of ultra-thin wire electrodes. This “brain pacemaker” does not record brain activity, but a new generation of U.S. Food and Drug Administration-approved devices that both stimulate and record brain activity are now commercially available. “They’re starting to upgrade Parkinson’s patients with this device, so many of them will have it within 10–15 years,” says Suthana. “These patients are permanently implanted, so they can come back for multiple studies. Some of them love to volunteer and have been in all our studies. We’re working with one of them right now to see how we can adapt our system to the new [DBS] device.” 

Trials testing the efficacy of deep brain stimulation for various neuropsychiatric conditions, such as treatment-resistant depression and severe obsessive-compulsive disorder, have also been underway for some time. The number of people enrolling in such trials will increase as the technologies required becomes cheaper to produce, and this will hasten their clinical testing and move the approvals along, making future treatments involving brain implants even more widely available—raising the thorny question of what will happen to all the data generated by all those devices.

The number of people using non-invasive devices that record and stimulate the brain is much larger. The global market for unregulated, direct-to-consumer neuro-wearables has been valued at more than $9 billion, and is projected to grow to over $15 billion by the year 2024. This growth will be partly driven by neurotechnology companies such as the Elon Musk-backed Neuralink Corporation in San Francisco and Los Angeles-based Kernel, both of which are currently developing wearable brain scanning devices—described as “Fitbits for the brain”—for mass consumption. The prototype devices currently available are already being used to collect vast amounts of brain-related data, and this, too, will inevitably increase as more devices come on the market. 

Neurological Bill of Rights?

According to Marcello Ienca, a senior researcher in the Health Ethics & Policy Lab at ETH Zurich, correlating brain activity with mental states enables researchers to make certain inferences from various types of non-sensitive information if it’s processed in a particular way. Although this is not “mind reading” as such, it still infringes on privacy, as it constitutes a type of behavioral profiling.   

“In the near future, as more people use consumer neurotech applications, it will be easier to correlate brain activity with behavior,” says Ienca. “Brain-related data can be aggregated and combined with other kinds of data, such as GPS data, social media use, and other online behavior. ” 

Potentially, large companies that either own or purchase access to that massive ocean of neurological information could trawl it offline for hidden gems, essentially exploring the brains of millions of people for marketing purposes, perhaps without their knowledge or consent.

“Classifying brain data as organs that cannot be sold or traded may undermine people’s right to decide which data they want to share.”

With funding from Facebook, a team of researchers and clinicians at the University of California, San Francisco has developed an algorithm that decodes the brain activity associated with words that are spoken or heard and translates it, in real time, into text on a computer screen. The brain activity is read by an electrode array placed directly onto the surface of the brain. Several years ago, Facebook technologists stated their aim to build wearable devices that perform the same function for mass consumption.

“In collaboration with university researchers, they have developed an implant for clinical use, but do they have policies on how they use the data?” says Ienca. “If this is ever deployed commercially, they’ll be able to collect a new source of data and combine it with the huge volumes of data they already own, and sell or share it with other parties.” 

“The more that private actors are involved, the more we’ll need transparent policies about data management,” Ienca added. 

UCSF neurosurgeon Edward Chang, senior author of the Facebook-funded study, says that there was a discussion about data management. “We agreed that they would not have access to the data and that access to it would be determined by the participants, and whether they wanted it shared publicly or not,” he says. “The main application we’re thinking about is restoring communication for people who have lost the ability to communicate because of stroke or injury to the brain.”

Suthana says that direct-to-consumer brain implants are still a long way off, but that it is important to consider the ethical issues nevertheless. “A lot of this is hype, and I don’t think it’s doable in the near future, but as we start to get there, there’ll be some very serious discussions that have to be had to make sure it’s done appropriately,” she says, adding that she is part of a U.S. BRAIN Initiative-funded consortium of researchers doing such work. “We have an ethics working group that meets every so often to discuss these things, and we’re aware that these conversations are going on in the public, but we’re being realistic about what’s actually possible.” 

Other organizations, and even some governments, are also considering the implications of neurotechnology for individuals and society. In 2019, the Organization for Economic Cooperation and Development (OECD) adopted the Recommendation on Responsible Innovation in Neurotechnology, which recognizes among other things, that neurotechnologies are fast-moving, follow uncertain pathways, hit squarely on hot-button issues like privacy and freedom of thought, have great potential for unintended use, raise numerous ethical and legal questions, and could require “agile forms of governance.”

“Responsible innovation in neurotechnology will require concerted action across governmental levels and across the public and private sectors,” the OECD recommendations read. 

In mid-December of last year, when the Chilean Senate unanimously approved its Neuroprotection Bill presented several months earlier, it became the first country in the world to enshrine “neurorights” into its constitution. The initiative, spearheaded by neuroscientist Rafael Yuste of Columbia University, considers the possible outcomes of advances in neurotechnology, arguing that any developments must respect and preserve people’s privacy, identity, equality, and sense of agency. “This is a pioneering attempt to regulate and prevent the possible misuses of neurotechnology,” says Ienca, “but classifying brain data as organs that cannot be sold or traded may undermine people’s right to decide which data they want to share.”  

“Chile is looking for binding regulations, but it’s unlikely that this approach will work everywhere,” he adds, “but top-down governance is not the only approach. We can also explore intermediate governance levels, such as the OECD initiative for responsible innovation to develop standards for data management and best practices.” 

There is also the possibility of taking a more “soft law” approach, of developing ethical guidelines to which companies and institutions would voluntarily adhere. “We are now developing a myriad of guidelines for artificial intelligence, and I believe we need to develop similar guidelines for neurotech—especially for data management, data sharing and individual rights.” 

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