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Pill-opticon: Electro-ceuticals and the future of medical surveillance

By Moss Tawny

On Tuesday, July 11 2017, in Butler County Court, Middletown Ohio, the tiny machine that keeps Ross Compton’s heart beating was allowed to testify against him. At around the same time, in a lab belonging to the Californian based Proteus Digital Health company, an ingenious configuration of copper and magnesium the size of a grain of sand was being swallowed alongside a psychotherapeutic drug, after which this miniscule fantastic voyager, having been activated by the test patients stomach acid, sent a text message to the eagerly waiting doctors informing them that it had, indeed, been taken. If they had wished it could have instead sent a Tweet.

Now, before we tumble any further down this particular rabbit hole, I’d first like to ask a simple question: have you ever had the feeling you were being watched? Of course you have. That momentary heckle raising, spine shivering, intrusion of irrational paranoia into our mundane little routines can happen to any of us. Of course given that, in the UK at least, there is one surveillance camera for every 11 citizens, the truth of the matter is that you probably are being watched, albeit only by a machine.

Such machines don’t even need to be switched on. It has been repeatedly demonstrated by various studies wherein looming pictures of eyes: robot eyes, dolls eyes, and even dots that look like eyes, were placed around participants, would lead to a subsequent shift towards pro-social behaviour. It would seem the mere suggestion that we might be watched is enough for us to act as if we are. So what does this have to do with a Tweeting tablet and Ross Compton’s tattle-tale heart? While we might consider these studies of watchful eyes to be examples of a highly abstract psychologically internalised surveillance, these recent instances serve as palpable and literal executions of such a concept. Some such devices, like the tiny transmitter and its cousins – which are already being hastily developed by the competitors of Proteus – are designed specifically as a form of surveillance. Others like the pacemaker in Compton’s chest, cochlear implants, and glucose level monitors are not primarily designed to amass data about a user’s activities or location, but can be very easily co-opted into doing so.

The Ross Compton case, where a warrant was issued to acquire the pacemaker data, sits amidst a small but increasing number of cases in which a person’s amassed data is leveraged against them in a legal setting. There have been similar cases involving the testimonies of various ‘Smart’ objects such as Amazon Echo’s Alexa or a Fitbit belonging to the victim employed in the prosecution of James Bates of Arkansas and Richard Dabate of Connecticut respectively. Additionally, given the increasing proliferation of networked devices with the ability to record and store audio-visual data in products as diverse as phones, fridges, cars, home security systems, gaming systems, TVs, baby monitors, watches and even children’s’ toys, the number of such cases is likely to rise. So why should the Compton case stand out as particularly disquieting? Partly because of the deeply intimate nature of the data concerned and partly because in ruling the data admissible, the judge effectively found that there is no legal distinction between data derived from outside the body and data derived from within it.

In each of these cases the evidence provided by the objects has been acquired legally, though not without opposition, but is the existing legal apparatus really capable of navigating the intricacies of such issues? Currently, under the guidelines laid out by UNESCO’s International Bioethics Community report, questions of bio-privacy are framed in terms of both confidentiality and, interestingly, copyright. Here the individual is considered to possess copyright of their genome, oddly conceptualised as something distinct from the body, but only over that genomic data which is unique to them. Outside of the genome, data can be obtained, shared, disseminated and processed in accordance with local laws and human rights rulings on a case by case basis. Although there is some concession of the difficulties that arise when legal machines running on analogue knock heads with the new realities of a digital world, there is little laid out in the way of international or even national guidelines. As such, bio-privacy remains a woefully under-legislated field.

With regards to the Proteus smart pill, the usual framework of informed consent applies, however a strange friction arises between a patient’s right to privacy and their right to contract. The tracer, as implemented by Proteus, is not only capable of sending messages to patients and their doctor but also to up to five individuals, assumed to be partners or relatives. This runs up against legal structures which prohibit the sharing of medical data except in the interest of the patient’s well-being.

While it’s easy to imagine patients with Alzheimer’s or similar memory issues being immensely appreciative of a device that allows them or their carer to know if they’ve taken their medication or not, these are not the only patients for whom the smart pill is being introduced. In fact, one of the main groups with which the drug is being trialled are sufferers of schizophrenic disorders. Here there is an uncomfortable shift from helping a forgetful patient to monitoring a non-compliant one. This is further complicated by the fact that, for patients with intense paranoia, trusting that medical professionals are not, in reality, spying on them is paramount to recovery. Whilst non-compliant patients are nominally offered a choice, between the tracer pill and a longer lasting dose administered all at once, can choosing between internal monitoring and an uncomfortable injection in the rear really be considered a free choice?

Furthermore much of the commentary around the potential of this pill centres not on its capacity to help the patient but in its potential capacity to reduce the millions of dollars in wasted medication lost as result of non-compliant patients, and perhaps more disturbingly the ‘cost’ of those patients becoming more ill and needing further treatment. Is this suspension of confidentiality really in the interest of the patient, or governmental health expenditure?

In the interest of sidestepping the trap of speculative futurism I won’t enumerate the potential dystopic implementations of these technologies, though I’m sure they’re evident. Instead I would like to briefly consider the ways in which medical, often brutally invasive, surveillance and control has already been exercised upon the most vulnerable members of society. There is a rich, repellent tradition of horrific treatments including castration and sterilisation brought against transgender and intersex patients, black and minority ethnic women, homosexuals and really anyone whose difference those in power contrived to medicalise. For a contemporary example take the forced anal examinations of suspected homosexuals and transgender women in Egypt, Cameroon, Syria, Lebanon, Tunisia, Turkmenistan, Uganda, and Zambia which are experienced as rape and which are conducted, officially, in the name of controlling the spread of STIs.

What does this mean for Proteus and Compton’s pacemaker? I believe in the promise of science, but never independently of ethics.

This new realm of electro-ceuticals and networked health care is innovative, exciting and perhaps incalculably beneficial. It’s certainly unstoppable. It is also profoundly dangerous in its capacity to abuse and control. And though the abuse of vulnerable bodies through invasive forms of control and surveillance is not a new phenomenon, it seems vitally important that we develop comprehensive and sensitive ethical legislature in order to prevent this technological innovation from doing what innovation has done in so many fields: making that abuse easier and more efficient.

The harsh reality of having to crowdfund your life-saving medical expenses

A two year old waiting for a cell transplant. A mother of two battling with cancer. A hit and run victim struggling to recover and a 92 year old man brutally punched in the face. These represent just a mere fraction of the growing number of Americans who turn to crowdfunding to pay for their medical bills.

In a country whose motto is ‘get rich on your own or shut up and die alone’ and where 40 percent of the citizens cannot cover a $400 medical expense, it shouldn’t come as a surprise that more and more people go online in hopes of convincing strangers that their plight is worthy of compassion… and a donation.

GoFuneMe has become a popular hub of crowdfunding for medical expenses among Americans. According to Rob Solomon, the company’s CEO, 1 in every 3 of the website’s crowdfunding campaigns seeks to cover medical bills. While the company has thus far declined to reveal precisely how many such campaigns there are, a visit to its webpage indicates that the numbers are staggering, and cover a wide range of medical ailments and emergencies—from cancer-related operations and organ transplants to car accidents and gunshot wounds. According to the Outline, the cumulative goal of GoFundMe’s medical campaigns reaches nearly $140 million.

The issue has gained national attention after several cases of people gathering donations for medical expenses online went viral and resulted in a public outcry. One of these people was Hedda, a woman who needed a heart transplant and was rejected as a candidate by her clinic due to her lack of a “secure financial plan.” The clinic then recommended that Hedda resort to crowdfunding to cover the costs of her operation. After posting a copy of the rejection letter on Twitter, Hedda was lucky enough to win the attention of thousands across the country, as well as a retweet by recently elected House of Representatives member Alexandria Ocasio Cortez. As one may predict, no one goes ignored while on the Ocasio Cortez train, and so Hedda’s campaign ended up exceeding its initial goal by more than $10,000. Alas, the overwhelming majority of campaigns do not go viral or get a boost from rising political stars. Which begs the questions, what happens to those who do not reach their goal?

Launching GoFundMe campaigns as a source of medical support is a result of multiple ills in the country’s structure, including crippling corporate greed and a failed healthcare system. Despite the fact that the U.S. spends more on healthcare than any other country in the world, it nonetheless ranks last in healthcare quality among developed nations. While the situation improved slightly following the passing of the Obama Care Act, the are still roughly 28 million Americans who have no health coverage at all. Furthermore, even those who do have insurance often fail to have their medical needs met and bills covered due to bureaucratic challenges, exorbitant co-pay requirements and inadequate healthcare plans.

How can the U.S. get out of this mess? Some say that a blue Congress in the new year will mean good news for the millions of Americans who pray to go viral in order to cover their medical expenses. Representatives such as incoming Alexandria Ocasio Cortez from New York are fighting hard for single payer health coverage, and seeing as healthcare constituted the linchpin of the November midterm elections and was the issue that restored the Democrats’ control of the House, some are hopeful that their efforts will bear healthcare fruits.

Ultimately, there is no doubt that a fair and functioning healthcare system could be a reality in America. It’s obvious that through reallocation of resources and addressing the obstacles head-on (such as big pharma lobbying and tax cuts to the wealthy that come at the expanse of social programmes), Americans can establish a proper healthcare mechanism that doesn’t pale in comparison to its counterparts in other developed nations.

Yet, an exhaustive reshaping of healthcare policy will only occur in tandem with a sweeping shift in the nation’s collective psyche as far as social benefits are concerned. For changes to be reflected on a governmental level, and for sufficient pressure to be exerted against pharma gargoyles and big donor leeches, the public must first become (at least somewhat) united in its conviction that a government for the people, and by the people, is responsible to grant its citizens basic services such as access to quality healthcare. It’s a simple matter of determining whether the country views one’s aspiration to lead a life of dignity and health as a human right or a privilege.