By Guido Cassinadri

In the first episode of the seventh season of Black Mirror, “Common People,” the story follows a couple in which the wife’s life is saved by an experimental therapy (spoiler incoming). The portion of her brain affected by an incurable tumor is replaced with synthetic tissue developed by the company Rivermind. The procedure is free, but in order to continue living and maintaining her cognitive functions, she must pay a monthly subscription to the company. The service provided follows the process of “enshittification,” a term coined by Cory Doctorow to describe how new and innovative online services start out as optimal for users and not very profitable for providers. Eventually, they reach a sweet spot with a good balance between service, pricing, and provider profit, until the point where, due to near-monopolistic power, providers can drastically reduce the quality of the service while raising prices and increasing profits. In the episode, the wife must sleep increasingly long hours each day to ensure the device functions properly and constantly utters advertising messages promoting companies that pay Rivermind for this service. The only way to escape this is to pay ever-higher subscription fees to Rivermind in order to receive new updates and features. Realistically, all of this happens within a legal contractual framework, where the involved parties have signed a commercial agreement.

Science fiction, right? Not quite. With due distinctions, unfortunately, this episode also reflects many of the real problems faced by patients who have benefited from experimental treatments with Brain-Computer Interfaces (BCIs) or Deep Brain Stimulators (DBSs), but who, after the trial, are left without any guaranteed plan for maintaining the service. As a result, they face abandonment or even unwanted explantation of the device. For example, in the BROADEN trial sponsored by St. Jude Medical, a former U.S.-based medical device company, 44 patients expressed a desire to retain their Deep Brain Stimulation (DBS) devices for treating depression at the trial’s conclusion. However, being financially responsible for device maintenance and any required surgeries, they faced the risk of unwanted explantation due to financial constraints.

Some key analogies:

• Absence of full informed consent: In the Black Mirror episode, the terms of contract are constantly updated in favor of the company’s interests and without user’s informed consent. Similarly, in real-life scenarios involving patients with implantable neurotechnologies, it has been shown that they are often not fully aware of post-trial access conditions, as they tend to focus narrowly on the immediate benefits of the therapy. This is also due to information burdens associated with informed consent processes.
• No other alternatives: Patients undergoing experimental therapies involving invasive neurotecnologies like BCIs and DBSs often suffer from treatment-resistant conditions and have already exhausted many other therapeutic avenues. This means they are often exhausted and without hope, placing them in a state of extreme vulnerability.
• Commodification of mental capacities: Whether or not one accepts the idea that devices that are highly integrated to the users’ cognitive system becomes a part of their mind, the fact remains that, in order to continue fully enjoying their cognitive, motor, and/or sensory functions, patients are often forced to pay out of pocket for extremely expensive maintenance services.
• Contractualist legal framework: Everything is legitimized by the mere formal presence of informed consent, which ensures the legal validity of the legal contract. It matters little that this consent may be the result of implicit coercion due to the lack of meaningful alternatives available to the patient. However, fundamental human rights, like the right to mental integrity, should not be violable through contractual forms. The state should intervene to prevent this potential mechanism of the free market from happening—ensuring that private technological innovation does not come at the expense of citizens’ bodies, minds, and lives.

Unfortunately, in the U.S., there are no binding regulations that guarantee post-trial access to BCI treatment. Moreover, combined with Elon Musk’s Neuralink, with the promise to enhance human cognitive abilities, raises additional concerns about the commodification of mental capacities. Black Mirror—and science fiction more broadly—has the power to highlight the dystopian dimensions of everyday technological use, sparking legitimate concerns and thoughtful reflection. One unintended merit of Neuralink’s questionable marketing strategies is that implantable neurotechnologies are becoming increasingly familiar to the general public. Fortunately, this growing awareness may help strengthen critical public scrutiny of neurotechnology companies, especially when they violate patients’ fundamental rights.

Author: Guido Cassinadri

Affiliations: Sant’Anna School of Advanced Studies, Pisa, Italy; Institute for History and Ethics of Medicine, TUM School of Medicine and Health, Technical University of Munich, Munchen, Germany

Conflict of interests: The author declares no conflicting interests

Social Media Accounts: Linkedin profile: https://www.linkedin.com/in/guido-cassinadri/