What If Big Tech Could Read Your Mind?

“With the deep brain stimulator, he was able to say six- or-seven-word sentences, the first 16 words of the Pledge of Allegiance. Tell his mother he loved her. Go shopping at Old Navy and voice a preference for the kind of clothing his mother was buying,” recalls Fins, who shared Greg’s journey in his book, Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness.

After 6 years of silence, Greg regained his voice.

Yet success stories like his aren’t without controversy, as the technology has raised many ethical questions: Can a minimally conscious person consent to brain surgery?  What happens to the people being studied when clinical trials are over? How can people’s neural data be responsibly used – and protected? 

“I think that motto, ‘Move fast and break things,’ is a really bad approach,” says Veljko Dubljevic, PhD, an associate professor of science, technology, and society at North Carolina State University. He’s referring to the unofficial tagline of Silicon Valley, the headquarters for Elon Musk’s neurotechnology company, Neuralink. 

It would be movement disorders, not depression, that ultimately catapulted DBS into the medical mainstream. In the late 1980s, French researchers published a study suggesting the devices could improve essential tremor and the tremor associated with Parkinson’s. The FDA approved DBS for essential tremor in 1997; approval for Parkinson’s followed in 2002. DBS is now the most common surgical treatment for Parkinson’s disease.

Since then, deep brain stimulation has been used, often experimentally, to treat a variety of conditions, ranging from obsessive-compulsive disorder to Tourette’s to addiction. The advancements are staggering: Newer closed-loop devices can directly respond to the brain’s activity, detecting, for example, when a seizure in someone with epilepsy is about to happen, then sending an electrical impulse to stop it.

With breakthroughs like these, it’s hard to envision any downsides to brain implants. But neuroethicists warn that if we don’t act proactively – if companies fail to build ethical concerns into the very fabric of neurotechnology – there could be serious downstream consequences. 

The Ethics of Safety and Durability 

It’s tempting to dismiss these concerns as premature. But neurotechnology has already gained a firm foothold, with deep brain stimulators implanted in 200,000 people worldwide. And it’s still not clear who is responsible for the care of those who received the devices from clinical trials. 

Even if recipients report benefits, that could change over time as the brain encapsulates the implant in glial tissue. This “scarification” interferes with the electrical signal, says Dubljevic, reducing the implant’s ability to communicate. But removing the device could pose a significant risk, such as bleeding in the brain. Although cutting-edge designs aim to resolve this – the Stentrode, for example, is inserted into a blood vessel, rather than through open brain surgery – many devices are still implanted, probe-like, deep into the brain. 

Although device removal is usually offered at the end of studies, the cost is often not covered as part of the trial. Researchers typically ask the individual’s insurance to pay for the procedure, according to a study in the journal Neuron. But insurers have no obligation to remove a brain implant without a medically necessary reason. A patient’s dislike for the device generally isn’t sufficient. 

Acceptance among recipients is hardly uniform. Patient interviews suggest these devices can alter identity, making people feel less like themselves, especially if they’re already prone to poor self-image. 

Eventually, when the device’s battery dies, the person will need a surgery to replace it. 

“Who’s gonna pay for that? It’s not part of the clinical trial,” Fins says. “This is kind of like giving people Teslas and not having charging stations where they’re going.” 

As neurotechnology advances, it’s critical that health care systems invest in the infrastructure to maintain brain implants – in much the same way that someone with a pacemaker can walk into any hospital and have a cardiologist adjust their device, Fins says.

“If we’re serious about developing this technology, we should be serious about our responsibilities longitudinally to these participants.”

The Ethics of Privacy

It’s not just the medical aspects of brain implants that raise concerns, but also the glut of personal data they record. Dubljevic compares neural data now to blood samples 50 years ago, before scientists could extract genetic information. Fast-forward to today, when those same vitals can easily be linked to individuals. 

“Technology may progress so that more personal information can be gleaned from recordings of brain data,” he says. “It’s currently not mind-reading in any way, shape, or form. But it may become mind-reading in something like 20 or 30 years.” 

That term – mind-reading – is thrown around a lot in this field. 

“It’s kind of the science-fiction version of where the technology is today,” says Fins. (Brain implants are not currently able to read minds.) 

Some researchers, including Fins, say that storing brain data is no riskier than keeping medical records on your phone. 

“It’s about cybersecurity writ large,“ he says.  

But others see brain data as uniquely personal. 

“These are the only data that reveal a person’s mental processes,” argues a report from UNESCO’s International Bioethics Committee (IBC). “If the assumption is that ‘I am defined by my brain,’ then neural data may be considered as the origin of the self and require special definition and protection.” 

“The brain is such a key part of who we are – what makes us us,” says Laura Cabrera, PhD, the chair of neuroethics at Penn State University. “Who owns the data? Is it the medical system? Is it you, as a patient or user? I think that hasn’t really been resolved.” 

Many of the measures put in place to regulate what Google or Facebook gathers and shares could also be applied to brain data. Some insist that the industry default should be to keep neural data private, rather than requiring people to opt out of sharing. But Dubljevic, takes a more nuanced view, since the sharing of raw data among researchers is essential for technological advancement and accountability. 

What’s clear is that forestalling research isn’t the solution – transparency is. As part of the consent process, patients should be told where their data is being stored, for how long, and for what purpose, says Cabrera. In 2008, the U.S. passed a law prohibiting discrimination in health care coverage and employment based on genetic information. This could serve as a helpful precedent, she says. 

Access to neurotechnology needs protecting too, especially for those who need it to communicate. 

“It’s one thing to do something over somebody’s objection. That’s a violation of consent – a violation of personhood,” says Fins. “It’s quite another thing to intervene to promote agency.”

In cases of minimal consciousness, a medical surrogate, such as a family member, can often be called upon to provide consent. Overly restrictive laws could prevent the implantation of neural devices in these people.

 “It’s a very complicated area,” says Fins. 

The Future of Brain Implants

Currently, brain implants are strictly therapeutic. But, in some corners, “enhancement is an aspiration,” says Dubljevic. Animal studies suggest the potential is there. In a 2013 study, researchers monitored the brains of rats as they navigated a maze; electrical stimulation then transferred that neural data to rats at another lab. This second group of rodents navigated the maze as if they’d seen it before, suggesting that the transfer of memories may eventually become a reality. Possibilities like this raise the specter of social inequity, since only the wealthiest may afford cognitive enhancement.