Who Owns Your Brain Data?
March 18, 2023 | Tags: FDA, REASON
The Battle for Your Brain: Defending the Right to Think Freely in the Age of Neurotechnology, by Nita A. Farahany, St. Martin's, 288 pages, $29.99
"We are rapidly heading toward a world of brain transparency, in which scientists, doctors, governments, and companies may peer into our brains and minds at will," Duke University bioethicist Nita A. Farahany declares in The Battle for Your Brain. As a defense against this neurosurveillance, her timely book argues for a right to cognitive liberty that includes "mental privacy, freedom of thought, and self-determination"—a right that allows us to track and hack our own brains but bars us from trespassing on other minds.
We face a choice, Farahany suggests: We can have a comprehensive surveillance-and-control dystopia or a world where individuals can choose to use devices and drugs that help them "work and learn smarter and faster, cure us of addiction and depression, and maybe even alleviate human suffering."
On the surveillance side, the Chinese state electric grid company is already requiring tens of thousands of its workers to wear Entertech helmets embedded with brainwave-measuring sensors to detect fatigue and other mental states. Such electroencephalogram (EEG) monitoring technology also has been developed by the Australian company SmartCap. It is used by more than 5,000 consumers around the world, including mining and trucking companies, to detect employee fatigue on the job. The San Francisco–based company Emotiv has developed EEG earbuds that can detect when an employee's focus on a task is flagging and suggest that he take a break.
Farahany describes a scenario in which a boss calls an employee wearing Emotiv earbuds to discuss a contract renewal with a 2 percent raise. Although the company would be willing to increase the employee's pay up to 10 percent to keep her, the earbuds detect that she is happy with the proposed raise. Any salary negotiation would essentially be over before it begins. "Even the staunchest freedom-of-contract libertarian," Farahany argues, "would question the fairness of this negotiation."
At the same time, Farahany is a fierce critic of regulators, physicians, and bioethicists who would paternalistically deny us access to our own brain data. The South Korean company iMediSync is marketing an EEG device that can detect early signs of Alzheimer's dementia with 90 percent accuracy. It also can detect evidence of various other neurological conditions: Parkinson's disease, traumatic brain injury, attention deficit disorder, even depression. Farahany argues that users should have access, unmediated and unrestricted by "experts," to the brain data that consumer neurotech can provide.
As examples of the government interference she abhors, Farahany points to earlier rules against giving people access to at-home pregnancy and HIV testing. She also mentions the absurd Food and Drug Administration (FDA) crackdown on the health information provided by the consumer genetic testing company 23andMe. (Disclosure: I, like Farahany, was an early and very happy customer of 23andMe.) "In my view," Farahany writes, "the FDA's actions against 23andMe were a tragic defeat for patient empowerment and a threat to freedom of speech by restricting our free access to information." She is absolutely right about that, and she is right not to want the same thing to happen to consumer neurotech.
In addition to the right to track your brain, Farahany says you have the right to hack your brain. She blasts apart the specious claim that boosting brain function with cognition-enhancing drugs such as Adderall, Ritalin, and Provigil is somehow equivalent to doping athletes with steroids—an analogy drawn by various universities, including Farahany's. Sports, she notes, are zero-sum games defined by arbitrary rules. Life is not. "To the extent that smart drugs and devices improve our focus, motivation, attention, concentration, memory, we ought to celebrate rather than prohibit them," Farahany argues. "What is a stake is at the core of cognitive liberty—the right to self-determination over our brains and our lives."
Does that mean peer pressure will coerce people into using cognitive enhancers so they won't fall behind? Forbidding the use of enhancements because of "implicit coercion," Farahany says, would be like what the government does in Kurt Vonnegut's dismal fable "Harrison Bergeron": It forces the smarter, prettier, or more athletic to wear handicaps so that everyone has equal capabilities and attributes. "The role of government should not be to make all our capabilities equal," Farahany argues, "but to enable us to flourish as individuals and as societies."
If cognitive liberty entails the right to enhance one's mental capacities, does it also include the right to diminish them? Here Farahany gives a somewhat qualified yes: People have the right to use drugs that arguably diminish some of their mental capacities so long as they do not interfere with the rights and liberties of other people or with the duties users owe to others. An example of the latter would be excessive drug use that makes a parent unable to care for a dependent child.
Farahany notes that the social costs of cognitive diminishment are "used to justify laws against drug abuse," which can have perverse consequences. Farahany, a longtime migraine sufferer, uses prescription opioids to control her pain. She points out that only 8 to 12 percent of people who take prescribed opioids for chronic pain become addicted. She also observes that the restrictive opioid prescription guidelines that the Centers for Disease Control and Prevention issued in 2016 have resulted in the "systemic undertreatment of pain, with consequences that are every bit as devastating as addiction."
Farahany does not address another horrific result of the restrictions on opioid prescriptions: the soaring number of overdose deaths as many opioid users turned to dangerous black-market drugs laced with fentanyl and other compounds. In addition to making drug use more hazardous, prohibition clearly violates the cognitive liberties of recreational drug users who do not interfere with other people's rights.
The implications of brain-monitoring and mind-altering technologies become much more sinister when they are deployed by agents of the government. Farahany points to the CIA's Cold War–era MK-Ultra program, which investigated the possibilities of mind control. Among other abuses, the CIA induced insulin comas in its subjects and dosed unconsenting people with LSD.
More recently, the 2020 NATO report Cognitive Warfare declared that "the human mind is now being considered as a new domain of war." To counter the weaponization of neurotech, Farahany argues for updating international anti-torture covenants to include a ban on the use of technologies "intended to obliterate our personalities, identities, and mental functioning."
Farahany also covers recent advances in brain–computer interfaces (BCI) by companies such as Synchron and Elon Musk's Neuralink. Neuralink's implantable BCI tipped with more than 1,000 electrodes is the size of a quarter. Synchron's BCI is a small mesh tube that is implanted in brains through blood vessels via a catheter. In January, Synchron reported that four paralyzed patients implanted with its device for more than a year were able to text, email, manage personal finances, shop online, and communicate care needs, all using only their minds.
Looking further into the future, Farahany takes seriously the transhuman possibilities of BCIs that could record and map the entire structure of a person's brain, including all memory traces. If that copy could be uploaded to run on appropriate hardware, it would offer users the possibility of digital immortality.
In this part of the book, Farahany focuses chiefly on BCIs as output devices under the control of the people into which they are implanted. But one can easily imagine governments using BCIs to invade users' mental privacy by monitoring their thoughts and scraping their memories. There is also the risk that malicious state and private actors would try to hack BCIs, subverting users' self-determination by directly manipulating their neurons to change their memories and political views.
"Neurotechnology has unprecedented power to either empower us or oppress us," Farahany writes. "The choice is ours." The Battle for Your Brain is a superb introduction to how rapidly advancing neurotech can either enhance or undermine free minds.
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