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Medical Devices, the DMCA, and the corporate profit motive

The Digital Millenium Copyright Act (DMCA) section 1201 makes the circumvention of Digital Rights Management (DRM) illegal, even when doing so wouldn’t violate any other copyright protection. The DMCA allows companies like Netflix and Amazon to punish piracy of the movies and television they stream, but, until recently, it let manufacturers like John Deere prohibit you from repairing your own device (like a tractor), and it lets medical device manufacturers like Medtronic prohibit you from testing their security or repair their ventilators without requiring an overpriced, unavailable Medtronic mechanic come type in a special code. It’s “felonizing contempt of business model,” as consumer advocate Cory Doctorow puts it.

An xkcd comic about the DMCA.
While not as draconian as this comic portrays it, the DMCA has empowered groups like the MPAA and RIAA to enforce private contracts in order to forward profit motives, very often in a way detrimental to the consumer.

But these problems aren’t exclusive to the DMCA. The DMCA is just one way in which megacorps, often with monopoly or oligopoly status, maintain their profits—at the expense of customers. Insulin pumps, pacemakers, ventilators, and insulin, by nature of the market, have maintained the power of their originators over their users. Intellectual property, in the form of patents and copyright, and a political system that allows Super PAC lobbying and pay-for-delay is how corporations maintain their hegemony.

There is a fundamental issue with the way the current system is being run, and I want to look into that with the help of a medical device or high-cost drug. These are symptoms, and I think that I’ll be able to find evidence that, despite the good that research funneled through corporations has done, the system that rewards corporations so heavily is unjust.

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HeLa and Henrietta

Henrietta Lacks lived from 1920 to 1951, but her cells are still around. Rebecca Skloot’s The Immortal Life of Henrietta Lacks is a personal and scientific history, keeping the focus away from a direct moral argument. In her telling of the personal effect on the Lacks and of Henrietta’s life, she treats the family’s stories very centrally. Skloot narrates the Lacks family’s concerns and beliefs about the case in terms of her interviews with them. She characterizes the family as wronged and still bitter, largely because they’ve been kept in the dark about what Henrietta’s cells were doing, how they had been taken (including the mere fact that they had been taken), or even what the cells were. She also includes a narrative about the breakthroughs that HeLa has helped with—developing this dilemma between the wrongs perpetrated against the Lacks with the wider benefits. The merging of the the personal and impersonal medical narratives lets the dichotomy exist without being exactly resolved. It also plays to much of the honoring of Henrietta’s memory—as her children and Skloot want to do, memorializing Lacks’s life and death.

 Timeline of HeLa's story from Henrietta's birth in 1920 to 2013.
A medical—and thus much less personal—timeline of HeLa’s life. Released under CC BY-2.0 by National Human Genome Research Institute

This timeline, on the other hand, is not a memorial to Henrietta’s life. It informs the viewer of Henrietta’s life’s milestones and the fact that she didn’t give consent to have her cells taken, but it doesn’t focus on that fact. The timeline is a medical history reference, so unlike the book or this Nature article, it does not focus on the morality of the situation or points of view from Henrietta’s family. Instead, it focuses on the scientific results, especially in the blurb above the chronological timeline. This shows a bias towards researchers and those achievements, so the authors more probably believe that the value derived from her cells should be celebrated.

Logarithmic graph of the exponentially decreasing cost of genome
sequencing.
It is becoming exceedingly cheap to fully sequence a genome, so a group of researchers decided to sequence HeLa’s (Henrietta Lacks’s) genome, receiving backlash from her family and the broader public.

The Nature article proposes that the practice of taking cells without consent (or doing other things) should be banned. It structures the argument around Henrietta’s personal story, using her innate rights to argue that patients like her (and by extension their families) deserve to have control over their cells. Its focus is on the opposite spectrum from the timeline, dampening the scientific achievements to highlight the ethical argument instead.

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Madness in the Nineteenth Century

Like physiological health, mental health is an ideal, and its nonmedical cultural environment shapes it deeply. Victorian ideas about women’s place in the Cult of Domesticity, for example, structured mental wellbeing around how well they fit into that mold. The general cultural unfitness of a mental patient stigmatized mental health, which has remained today. There is gradual work to remove this stigma, but it nonetheless remains. In fact, despite great medical change around the treatment of mental illness, like the development of the “talking cure” in contrast to the rest cure or opiates, popular treatment of mental illnesses remains similar to 19th century beliefs. They are seen as signs of weakness or essential deformity of the person.

Don't Worry---Cheer Up. / Worry wears worse than work / Worry
wastes energy, work utilizes it. / Worry subtracts, work multiplies. /
Worry dwarfs, depresses, confuses, kills. / Worry stops digestion,
paralyzes the bowels, slows the heart. / Worry anticipates failure and
creates disaster. / Worry is a mind malady---a  mental unsoundness. /
Anxiety in the face of grave danger is natural and unavoidable. / Worry
about petty troubles, or even big ones, is useless and may become
calamitous. / Worry is often a habit and may be cured by an effort of
the will. / Ofttimes worry is due to loss of sleep, tea or coffe
indigestion or constipation. / Take a neutral bath at bedtime, eat
biologically, abjure tea and coffee, move the bowels three times a day
and---CHEER UP.
A 1920 medical manual from J.H. Kellogg recommends sufferers of neurasthenia to stop worrying and cheer up in poetry, showing some of the “blame” being put on the patient. Source: Wikimedia Commons (page 8, public domain)

Mental health is not fundamentally different from physiological health, and it often derives from physiological issues itself, like addiction. And exaggerated in mental health diagnoses and attitudes toward ill people is discrimination, especially racially. Black people, paralleling their general medical undertreatment, remain undiagnosed or misdiagnosed for mental illness more often than white people, and American culture, at least, is much more likely to sympathise with white mentally ill people than black mentally ill people. “The odds that white shooters will receive the mental illness frame are roughly 19 times greater than the odds for black shooters,” one study reports.

Mental illness is often characterized differently by authors depending on their intent. In Doyle’s The Sign of Four, for example, Holmes is treated as ever-curious and having a very active mind because of his addiction to cocaine. Nineteenth century doctors treated male neurasthenics as hardy with strong work ethic rather than stigmatizing their disease. But nineteenth century doctors, in medical journals discussed in Washington’s Medical Apartheid, sought to discredit black people and assigned them the moniker of madness.

Sigmund Freud, founder of psychoanalysis, holding a cigar.
Photographed by his son-in-law, Max Halberstadt, c. 1921.
Freud’s developments in psychology were, like other doctors, trying to develop a sense of objectivity about mental diseases. They generated new health-based interpretations of behavioral and moralistic behavior. Source: Wikimedia Commons (public domain)

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Gene Drives and Vivisectors

Genetic engineering is one of the most popular research fronts in modern medicine and biology. It’s in its infancy, with preliminary studies struggling to even select or splice the right genes. But previous genome work, a widening availability of the tools used to genetically modify organisms, and breakthroughs with CRISPR mean that, although it is reasonably safe (ethically speaking) now, the field’s semi-hypothetical ethics questions will become very real very soon.

Genetically modified organisms (GMOs) are controversial in public opinion, and carry much of the same rhetorical argument as vivisection. Scientists, for the most part, “side” with genetically modified organisms, noting them as mostly safe for small modifications, but fears about large-scale intervention by “Big Agra” (Monsanto and companies like it) and fears about excessive Western influence on GMO standards have degraded the image of these technological improvements. Just like with vivisection, fears about the potential of the technology run rampant. These are typically unsupported by reality, but like Dr. Moreau’s beastfolk, they capture public imagination. The ideas that large corporations want to kill the people and that vivisectors really want to cut up humans block progress.

A shrew holding up a sign with "Give Monsanto a Death Blow"
written on it.
This is part 13 of a 15 part series advocating exclusively against Monsanto, demonstrating the great public animus. “Say NO! to monsanto! Pt. 13” by adriansalamandre on Flickr is licensed with CC
BY-NC 2.0. To view a copy of this license, visit https://creativecommons.org/licenses/by-nc/2.0/
A comic about "kill genes" from ALTHEADLINES
The conspiracy of large corporations has depicted GMOs as a weapon of the plutocracy. “GMO Kill Gene” by altheadlines on Flickr is licensed with CC BY-ND 2.0. To view a copy of this license, visit https://creativecommons.org/licenses/by-nd/2.0/

Progress is poorly defined, but scientists use it as a motivator regardless. The “reckless expert scientist” places faith in the power of experiment, The New York Times, in its article about gene drives—one of the more promising and more alarming gene technologies—discusses this divide between the reckless expert scientist and the fretful uneducated public. Dr. Moreau plays the character of the reckless expert scientist, having been thrown out of society yet still pursuing mythical progress. Gene drives allow geneticists to insert genetically modified copies of an organism (mosquitoes for example) into a population and rapidly spread that gene across the population. Scientists and public health experts want to stop malaria by genetically modifying mosquitoes and releasing them into the West African wild. But fears about using this to sneak in harmful gene drives, “colonial medicine,” and wide ecological failure abound, paralleling fears about vivisectors and even dissectors. Their practitioners had some valid use cases for vivisections, and despite poor minimization of harm, made scientific breakthroughs similar in impact to erasure of malaria.

Rioting and unease about vivisection was much louder and direct than gene modification protests can likely become because gene modification is invisible, but new science remains poignant. Fears about gene modification transferring to humans largely correspond to fears about vivisection transferring to humans, although the line in the sand may be ultimately drawn differently. And the way that scientists shrug off risk and harm in the pursuit of experimental truth is equally frightening to a general public despite ethical regulations.

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ABC’s Elementary and Sherlock Holmes’s abnormal addiction

Sherlock Holmes is addicted to cocaine in the Sign of Four. He claims that he uses merely for a “mental stimulant,” which is probably partially true given Sherlock’s unusual psyche. ABC’s Elementary portrays Sherlock in a similar way: he’s a recovering addict who manages to stop drugs cold turkey, mostly from his father’s behest. The show uses drugs and medical imagery extensively in the development of Sherlock’s character. Dr. Watson, the voice of reason for Sherlock, is an ex-surgeon and Sherlock’s sober companion, meaning that the theme of Watson’s Sign of Four speech—asking Sherlock to care for his health—is repeated throughout the series. She puts the focus squarely on Sherlock’s internal struggle with a past that he wants to hide. This manifests in some of Sherlock’s unhealthy habits like refusing to sleep until a case is solved or refusing to play his violin or being mentally absent at group therapy meetings. Mental health, a subject mostly untouched by Doyle, is a common theme of Elementary.

Elementary Intertitle
Elementary studies Sherlock’s ups and downs in terms of his habits and treatment of others

But Elementary also tells stories about physiological health. Like in The Sign of Four, Elementary’s Sherlock follows story lines with poisoning and medical elements. Drugs are often the crux of the medical stories Sherlock investigates: a heroin poisoning of a bank’s executive meant to frame it as an overdose hints at the social elements of addiction and health. The Sign of Four also handles the social elements of health: both Major Sholto and Captain Morstan die in events directly connected to thefts of the treasure, and the original Sign of Four plan was motivated by Sholto’s self-inflicted poverty (gambling addiction). The framing of both stories in Sherlock’s cocaine “addiction” (I use quotes here because it isn’t exactly portrayed as such) clarifies health as a social image because Sherlock is mostly treated as well by his peers, being judged by the quality of his work in either story—the image of unhealthfulness brought on by cocaine isolated as a possible danger rather than a factor determining health on its own.

At the time the original Sherlock Holmes stories were written, the negative effects of drugs were neglected by doctors, but even in modern depictions Sherlock appears as sane and healthy despite vice
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The Strange Case of Dr Jekyll and Mr Hyde

The Strange Case is fantasy about the limits of medical science, used as a lever into moral and mental exploration. At the time of publication, medicine (especially drugs) was such an experimental field that doctors were essentially testing these drugs on their patients—many of which (laudanum, cocaine, oxycontin) were highly addictive. Addiction was known, but straddled the line between disease and vice. This parallel between Dr Jekyll’s fictional transformative drug and real drug use is the biggest component of medicine as a moral element. The story admits Hyde as an immoral creature of vice, symbolizing the degrading effects that addiction has on a person’s character, but Jekyll’s identity is retained (until he finally loses control of the transformations)—which, as his more reasonable persona, the guilt, abdication of conscience, and other tendencies that addicts are prone to. Jekyll is not as starkly immoral as Hyde, but he is certainly irresponsible–which is where the line for him starts to blur between physician practitioner and patient (more accurately, test subject).

Jekyll’s haste and “unscientific” desire(treating the potion as a vice rather than an experiment) led to his ruin.

Lanyon represents the establishment criticism of Jekyll’s risky and short-sighted experimentation, which traces its history through to the modern day. Doctors using drugs is no longer frowned upon (although, the precise drugs that were prescribed at the time of publication are now known as unmedicinal), but there is a clear establishment, and it’s represented by professional associations like the American Cancer Society or American Heart Association.

As official, established sources of medical doctrine (not to imply they are undeserving), the ACS provides official medical advice but also decries hack therapies

Morality doesn’t exactly correspond to this modern image of efficacy and responsibility (the ethos represented in malpractice suits), but it does align with the idea of a trustworthy physician. Untrustworthy and unethical physicians come out as scandals because it isn’t the expectation of a patient, and Jekyll’s untrustworthy behavior (bleeding-edge experimentation) makes him a poor physician.

I can’t find as clear of a relation for health as the specific nature of Jekyll/Hyde’s addiction and immorality, but it is relatively clear that he is an unhealthy man. Especially near the end, when he and Lanyon become so scarred by the existence of Hyde and Jekyll by the constant transformation that they become pale, sickly, and finally dead. This is clearly an unhealthful state, discrediting Jekyll as a physician if he still has any, and demonstrating the relation between morality and health. This is also encoded by Hyde’s deformity without malformity and his dual status as a very unhealthy man. So there is clearly some sort of link between health and morality and especially physicians’ behavior, but I can’t exactly specify it.