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Body Integrity Dysphoria and the Gustavson Case

image of xrays of multiple body parts

Warning: This article contains graphic descriptions of bodily mutilation.

Early in 2022, I wrote a piece for The Prindle Post discussing the arrest of John Yalu for the suspected murder of Kalman Tal. The circumstances surrounding Tal’s death are unclear, but the initial facts appeared to indicate that he had paid Yalu to amputate his leg, despite Yalu having no medical training. Speculation was, and remains, that Tal suffered from Body Integrity Dysphoria (BID), a rare disorder which makes sufferers feel like a disabled person trapped within a non-disabled person’s body and for which there is no agreed-upon treatment.

In that article, I argue that if we are committed to the principle of do no harm, then all treatment avenues, regardless of how distasteful we may find them, must be considered. Failing to do so would abandon those with the disorder to their suffering and force them to consider dangerous, even life-threatening alternatives like black-market surgery or DIY operations.

Fast forward to May 2024 and London, where the criminal court sentenced Marius Gustavson, 46, to prison. Charged with, amongst other things, five counts of causing grievous bodily harm, Gustavson was given a life sentence, meaning he will serve no less than 22 years behind bars. The actions that warranted such a severe sentence have a Hannibal Lecter quality.

Gustavson, who called himself the “eunuch maker,” ran a highly profitable business providing body modifications to willing participants. This was despite neither Gustavson nor any of those assisting him having medical training. Additionally, these operations were carried out in non-surgical settings as seemingly innocuous as flats and hotel rooms. This, by itself, would be shocking, but it is not simply that operations were carried out by criminally unqualified individuals such as Gustavson. What elevates this into the realm of body horror is the operation’s nature, severity, and voyeurism.

As listed by the Criminal Prosecution Service, the 22 procedures in which Gustavson was involved included “the removal of the victims’ testicles, the amputation of penises, clamping of testicles with burdizzo clips (ordinarily used by vets in the castration of cattle), and the insertion of needles into genitalia.” It was not simply that these bodily parts were removed or mutilated, although that is itself horrifying, but that such tissue was then kept by Gustavson and his accomplices either as trophies, to be sold online, or in what might be the most disturbing fact of this case, to be cooked by Gustavson and ate.

To add another layer of horror to this case, Gustavson not only carried out these procedures but also ran a pay-per-view service where subscribers could watch him work. Altogether, between 2017 and 2021, Gustavson’s business earned him £223,229.43, $32,972.99 and €24,799 in profit.

What links this to the Yalu and Tal case is that Gustavson claims to have been suffering from BID. What’s more than this is that, according to his legal defense, Gustavson wanted to put “a smile on people’s faces by offering a service to those suffering, like him, from what was described as [BID].”

Now, whether Gustavson suffered from BID is a matter for debate. He had undergone surgical interventions himself to alter his physicality. This included, but is not limited to, having his penis removed in 2017 in a procedure carried out in a London flat and, in 2019, had to have his leg amputated after he deliberately submerged it in dry ice. Those who helped Gustavson in both instances also received jail sentences.

For my part, I doubt whether he had BID. His actions do not conform with the symptoms typically associated with the disorder. Most notably, those with BID rarely seek additional amputations or modifications once the part of their body which caused the initial distress has been removed. Gustavson, on the other hand, sought multiple modifications. Additionally, his desire appears to have begun to manifest after his divorce in 2016. Those with BID start experiencing symptoms in mid to late childhood. So, I suspect Gusatvson was using BID as a legal defense to lessen the likelihood or severity of his criminal sentencing. This did not work.

But, why does this matter from a philosophical and ethical standpoint?

First, it draws into question what the purpose of medicine is and what procedures fall under the umbrella of treatment. We typically accept that the amputation of a diseased limb to save someone’s life is acceptable. But is that the only circumstance? Might it be those other motivations, such as body modification or the improvement of the quality of life, could justify limb amputation?

Second, there are questions of justice and resource allocation. Who should pay for these operations and the ongoing support for the “willingly” disabled? Is it OK to amputate a limb if the individual pays out of pocket? What about access to benefits and social support? Should these be assigned to those who could have otherwise not needed them?

Third, we face questions about the limit of consent. Can you provide valid consent to such an operation, or are there certain things to which you cannot consent? Does this even matter in the case of such surgeries?

And fourth, can these interventions be legal? Is there any way that such an operation can be justified within the eyes of the law, or is the law’s very purpose to prevent such harmful acts, like these, from occurring?

But what I think both Gustavson and Yalu’s cases raise is the vulnerability of those suffering from BID. Those with the disorder have nowhere to turn to address the significant distress that they experience, which can last for decades, even entire lifetimes.

If the purpose of medical practice is to use knowledge of science and biology to improve the quality and length of life, then it seems clear that this will involve, in some exceptional circumstances, interventions which may be ethically troubling and socially distasteful. Indeed, many of the interventions and technologies which we might today consider ethically untroublesome or even mandated, like organ donation, were once viewed as affronts to the sanctity of the body and to nature itself.

This is to be expected as new knowledge and technologies extend the sphere of medical practice into realms which, for one reason or another, had previously remained outside its control.

Resisting calls to even investigate the effectiveness of amputation in BID cases cuts off potential treatment options for those with the disorder. This, in turn, means that those with BID feel betrayed, unseen, or misunderstood by the medical profession. So, they seek out alternative treatments, making them easily exploitable by the likes of Gustavson, who conducted these “surgeries” not to provide any therapeutic benefit but to satisfy his own desires and to make money.

It may be weird. It may be unbelievable. But until a better alternative comes along, amputations conducted under proper surgical conditions may be the best way to help those with BID. After all, who is likely to cause more harm, a trained surgical professional working with the proper tools in the right environment or someone like Gustavson, selling the spectacle of quasi-surgery and eating what he takes?

The Educational and the Political

In March of last year, the medical school I attend was on the front page of Fox News. The headlines: “Indiana medical students subjected to DEI instruction on gender” and “First-year medical school students exposed to woke ‘sex and gender primer’ lesson.”

The lesson in question was delivered in our first-year anatomy course which, when I took the course, was included in a broader lecture on the embryology of the reproductive organs. This material, though, was explicitly labeled as political — even indoctrination — by commentators at Fox: to quote the latter article above,

“It’s dangerous for one major reason, and that is that these kinds of ideas are very controversial amongst Americans, and to have a medical world pick one side, if you will, pick one sort of approach in a very controversial ideological area just breeds mistrust.”

The same commentator continued:

“Politicization of the idea about gender is something that’s harming children in America, and that’s something we’re very much against, and political ideas shouldn’t be taught in a course on anatomy.”

Education has always been a topic of political interest, but the rhetoric has recently seemed to reach a fever pitch. Book bans. Bans on Critical Race Theory and the discussion of sexual orientation and gender identity.  The partisan destruction and reconstruction of New College in Florida. The list goes on, and the debate has likely reached your doorstep, just as it has mine. But even in a heated debate, the core of these arguments deserves our scrutiny, and this instance centering on medical education provides us with a case study.

What happens when education and politics collide?

*     *     *

The purpose of medical education is to train physicians — to take students with limited experience in medicine (if any) and prepare them to be excellent clinicians. The adjective excellent here is important: competence is the minimum standard, but excellence is the goal. Take a look at the mission statement of any medical school, and you’ll see this idea repeated over and over — and for good reason. You do not just want a competent doctor, you want a good doctor; you may take a competent physician in a pinch, but the doctor you want is one who not only understands the basic pathology and treatment of your malady, but is also kind, compassionate, and attentive. You want a doctor who seeks to understand the larger picture of your health, who understands your goals, who makes you feel safe, comfortable, and heard. Doctors who don’t integrate these facets of medicine into their practice may be competent, but they are not successful.

As such, a key part of the medical curriculum extends beyond the basics of pathophysiology and treatment: medical students are not only expected to be competent in the science of medicine, but also demonstrate the virtues of a good physician. In the clinical curriculum at my medical school, an attending physician provides feedback to students through a 14-point rubric — only four of which are related to medical knowledge. The remaining 10 encompass these broader attributes: how does the student seek out and account for a patient’s social context? How do they communicate with patients and their families? Do they demonstrate integrity as a member of the healthcare team? Do they recognize and respect cultural differences? Are they empathetic?

It’s important to reiterate that the reason students are assessed in this way by their attending physicians is that attending physicians are assessed in this way by patients: medical knowledge is only part of what you want from a doctor. This is why, before students reach the clinical phase of their education, the first two years of medical school are spent in the classroom, where we not only learn what causes such-and-such disease, but also the social determinants of health and how we can cultivate the “soft skills” which are fundamental to clinical practice. As part of this, we are intentionally exposed to a variety of experiences designed to contextualize the idea of health in its social moorings: we learn about how to safety plan with victims of domestic violence, how people of different ages or cultures may have different expectations regarding communication and treatment planning, how to care for people with disabilities, and how, for some patients, spirituality will play a large role in their health care. We also learn from members of the LGBTQIA+ community and are taught how to be a supportive ally. All of these experiences are important for training excellent, empathetic physicians.

With this context, we see that the claim made by the commentators at Fox — that a sex and gender primer is a political intrusion into medical education — is both wrong, and a vast oversimplification.

Above, we discussed how medical education involves training in both clinical and social knowledge and skills — and the lesson at the center of this controversy is an excellent example of teaching at that intersection. The early slides define the terms to be used: it defines sex as a primarily biological construct, and gender as a primarily social construct. It further breaks down both of these terms, drawing the distinction between genotypic and phenotypic sex and elaborating on the differences between gender identity and gender expression. These are useful distinctions to draw in clinical medicine, because all of these concepts are independent of one-another: genotypic sex does not entail a phenotypic sex (or vice-versa), and gender identity and expression can vary in their overlap. Further, an entire section of the lesson is devoted to elaborating on how students, as future healthcare providers, can be inclusive of gender- and sexual-diverse patients: for example, using appropriate pronouns and person-first and anatomy-based language. All of this is important information for medical students, who will care for people across these spectra, to know: with this knowledge, students will be better prepared to build a therapeutic relationship with these patients and provide the excellent healthcare they deserve.

The lesson also provides students with the scientific, clinical knowledge which one would expect of a medical school lecture. It makes the scientifically correct claim that sex and gender are non-binary; and though it is only briefly summarized (as, in my curriculum, the material was covered in detail in another course), the lesson shows how differences in sexual development can place individuals along an entire spectrum of sex. You can have two X chromosomes and male-like genitalia; you can have an X chromosome and a Y chromosome and female-like genitalia. A biological, scientifically-informed concept of sex admits to no binary, and medicine has understood and discussed these differences in sexual development for nearly 50 years. Again: medical students will care for patients with these differences in sexual development, and understanding these differences is a vital part of building a therapeutic relationship and providing excellent healthcare.

We see, then, that the content of this lesson is immediately and well-connected to the purpose of medical education. I do not contend that this content is politically uncontroversial, but we see, here, a very different picture than that presented by the commentators at Fox. This lesson is not indoctrination, it is not ideological, and it does not represent the insertion of political content into an educational context. Rather, pre-existing educational content which aligns with the stated and agreed upon goal of medical education — the training of future physicians to provide excellent care — has been politicized. And though it may seem like splitting hairs, the distinction is incredibly important: there is not a flood of politically-charged content into medical education at Indiana University, but a flood of politically-motivated criticism of medical education’s established curriculum and mission.

But in these terms, the debate takes a very different contour: a commentator can only decry the inclusion of this material in medical education if they disagree with training physicians to provide compassionate, socially-informed care to gender- and sex-diverse communities. And maybe they do. But I won’t put words in their mouth, and, instead, I’ll state the broader point to be had here. Politics and education frequently collide, but the blame should not always be placed on education: in many cases, the educator does not decide to be political, but the politician decides that the educator is. This is why debates about political content in the educational context are, frequently, missing the point: we should not always debate whether or not political content should be discussed in the educational environment, but we should also consider whether or not content which is well-connected to an educational mission should be considered political. I believe that, in the case of the sex and gender primer in my medical school and in many similar cases, the answer is no, and the mechanics of the debate deserve to be questioned.

“Suicide Kits” for Sale

photograph of Amazon search bar

This article discusses suicide. Following common journalistic ethics practice, precise details about means or resources for committing suicide may have been deliberately left out or altered.

Method matters. Depending on the study, between 80% and 90% of people who attempt suicide and fail do not go on to attempt suicide again. The public health implication is that by regulating the availability of popular and effective means of suicide – mainly firearms and select chemicals and pharmaceuticals – deaths from suicide can be prevented.

Given this, what should we make of the fact that highly purified sodium nitrite, an increasingly popular option for suicide, has been readily available for purchase on Amazon in the United States? A lawsuit filed on September, 29th accuses Amazon and Loudwolf – a sodium nitrite manufacturer featured on Amazon – of “promoting and aiding” the suicide of two teenagers. A Twitter thread by Carrie Goldberg, a lawyer working on the case, characterized Amazon as a “serial killer.”

The case will likely turn on a number of details alleged by the plaintiffs: that Amazon recommendations packaged together sodium nitrite with other supplies and informational materials in so-called “suicide kits”; that Amazon failed to enforce its own policies; that Loudwolf failed to include FDA-required warning labels on sodium nitrite; that Amazon was previously warned and did nothing about sodium nitrite sold on its platform being used in suicides; that no information was included about methylene blue (the recommended treatment for sodium nitrite poisoning); that there is no compelling reason to allow household purchases of pure sodium nitrite; and, of course, that both deaths were minors.

Abstracting away from the details, however, the case is part of a decades-long pattern of the internet facilitating suicide – from providing community, to disseminating information, to assisting the purchase of supplies.

It began in 1990 with alt.suicide.holiday, a Usenet news group (similar to an internet discussion forum). Users would frankly discuss suicide and share tips and resources. While that group is now defunct, there have been multiple variants. The popularity of sodium nitrite as a means of suicide is attributed to a recent iteration. In many U.S. jurisdictions, advising or encouraging suicide is illegal, so these sites’ relationship with the law is complex – so too is their relationship with the media. Such forums begin as niche communities of the suicidal for the suicidal, and end up as New York Times exposés (most recently in December of 2021). Once aware, grieving families and the broader public often push (successfully) for these sites to be shut down or hidden from internet search results.

In contrast to the prevailing public health or prevention narrative of suicide, the leitmotif of these communities is, in their words, “pro-choice.” The idea is that the right to suicide is simply an extension of our personal autonomy and right to self-determination.

Especially in liberal individual rights-oriented contexts, autonomy is an enormously important ethical principle and people are given broad latitude to make their own decisions as long as they do not negatively impact the rights of others.

In American medicine, for example, patients have an almost unlimited license to refuse treatment. However, humans are not always autonomous actors. Children for instance are not allowed to make their own medical decisions. Being intoxicated is another common exception. In rare cases, people have been known to commit sexual assault or other crimes under the influence of the sleep aid zolpidem (Ambien). The defense is that these were not autonomous actions; that they did not flow from the authentic reasons and desires of the offender.

Can suicide be an autonomous act? Under the prevailing medical account of suicide, in which suicide results from serious mental illness, it almost definitionally cannot. In American law, risk of harm to self or others is grounds for violating patient autonomy and forcibly administering treatment.

That a person is suicidal is treated as evidence that they are not in sound mind and not an autonomous decision maker. Suicidality discounts autonomy.

Those in the online suicide “pro-choice” community challenge this logic and hold that suicide can be a reasonable reaction to a person’s life and circumstances, and people should have access to the knowledge and means to kill themselves relatively painlessly. In this they have at least some philosophical company. Thomas Szasz, a controversial Hungarian-American philosopher and psychotherapist, long asserted that suicide was simply a choice as opposed to an expression of sin or illness.

Szasz is an extreme case and was broadly skeptical of the very designation of mental illness. However, in contrast to a previous Christian sanctity-of-life framing, there is growing acceptance in the Western world that suicide may not always be unreasonable. Instead, it can be an understandable response to circumstances in which someone’s quality of life is below some personal threshold. A good case in point is the right-to-die movement, which advocates for medical-aid-in-dying and physician-assisted suicide. Ten states currently have medical-aid-in-dying in which a terminally ill person with six months or less to live is able to request a lethal medicine they can ingest. Supporters of medical-aid-in-dying stress that the practice is distinct from suicide, partly to escape the stigma associated with suicide, but the conceptual distinctions are slippery.

America is comparatively conservative, but several nations have far more permissive laws when it comes to assisted suicide. Belgium, the Netherlands, and Canada, among other countries, allow for voluntary euthanasia on the basis of extensive and untreatable mental suffering even absent terminal illness or, indeed, any physical illness whatsoever. (The ethics of this have been previously discussed here at the Prindle Post.) The 2018 case of Aurelia Brouwers, who was voluntarily euthanized in the Netherlands after years of failed mental health treatment, brought broader attention to the practice. She was the subject of a short film documentary.

Once it is accepted that unbearable suffering alone is an adequate basis for suicide, then distinctions about how long someone has left to live, or whether that suffering is mental or physical become secondary.

The process of seeking assisted suicide on the basis of mental suffering is supposed to have extensive safeguards, yet critics worry that slip-ups happen. Note, though, that the locus of discussion shifts from the act of suicide to the process of doing it responsibly and ethically.

Surprising to some, among the staunchest critics of the right-to-die movement are segments of the disability rights movement. The concern is that people may be pressured into choosing assisted suicide due to discrimination against people with disabilities or inadequate medical care, i.e. that these decisions are not fully autonomous. Of course, there will always be reasons for suicide, and these reasons may often be due to larger social and economic failings. Poverty is a known contributing factor to suicide. How reasonable this is may depend on where one is standing. In individual cases it is partly the environmental factors – poverty, debt, personal tragedy, discrimination – that can make suicide seem an appropriate response to circumstance. And yet, it may appear ghoulish to have a state-sanctioned process that facilitates suicides partly driven by these factors that the state itself perpetuates (or at least is often in the best position to address.)

Negotiating the appropriate policy prescription remains an impossible task. Mental health professionals, suicide prevention advocates, the American right-to-die movement, disability rights activists, and the online suicide pro-choice community can all share a broader commitment to self-determination and yet disagree vehemently about specific issues: when suicide is an autonomous act, what kind of safeguards need to be in place, what counts as unbearable suffering (or a lack of possibility of improvement), and what action is justified to prevent suicides.

Still, vanishingly few people would consider 16-year-olds killing themselves with online instructions and chemicals purchased on the internet as anything other than a tragedy.

It is statistically likely that had the teens in the lawsuit against Amazon attempted suicide with a less lethal method, they could have been successfully treated and their suicide attempt would have been a thing of the past.

Without speculating on the details of the specific case, it is nonetheless worth acknowledging that Amazon, whatever its failing as a corporation, cannot be the sole cause of this or any suicide. People are seeking information and supplies. And at least some suicides will default to known, highly lethal methods like firearms. It is also true that while the majority of those who attempt suicide and fail do not attempt again, previous suicide attempts are the single biggest risk factor for a later successful suicide. Put cynically, there is a demand. Regulating supply, while important given the relevance of the method, can only do so much. Suicide often exists at the intersection of means, mental health, and personal and environmental circumstance.

One relatively radical way to think about suicide would be as a regulated right – something permitted but tightly controlled. The provision of medical care and mental health care would presumably be part of seeking state-sanctioned suicide. People would need to have good reasons (whatever society decides those reasons are) for seeking materials-for or aid-in suicide, and undergo an appropriate approval process.

As countries like the Netherlands and Canada illustrate, negotiating what this approval process should be like is fraught. The balancing point of different communities with an interest in suicide including the suicidal, their families, mental health professionals, disability rights activists, religious communities, and the state will undoubtedly be a precarious one. Nonetheless, taking seriously the demand for suicide could plausibly help to bring suicidality out of the dark as something that people can talk seriously about and potentially get treated for. Surely a society ought to inquire as to why its citizens wish to take their own lives.

If you or someone you know is struggling with thoughts of suicide, (prevention-focused) resources can be found at SpeakingOfSuicide.com/resources.

What Morgellons Disease Teaches Us about Empathy

photograph of hand lined with ants

For better or for worse, COVID-19 has made conditions ripe for hypochondria. Recent studies show a growing aversion to contagion, even as critics like Derek Thompson decry what he calls “the theater of hygiene,” the soothing but performative (and mostly ineffectual) obsession with sanitizing every surface we touch. Most are, not unjustifiably, terrified of contracting real diseases, but for nearly two decades, a small fraction of Americans have battled an unreal condition with just as much fervor and anxiety as the contemporary hypochondriac. This affliction is known as Morgellons, and it provides a fascinating study in the limits of empathy, epistemology, and modern medical science. How do you treat an illness that does not exist, and is it even ethical to provide treatment, knowing it might entrench your patient further in their delusion?

Those who suffer from Morgellons report a nebulous cluster of symptoms, but the overarching theme is invasion. They describe (and document extensively, often obsessively) colorful fibers and flecks of crystal sprouting from their skin. Others report the sensation of insects or unidentifiable parasites crawling through their body, and some hunt for mysterious lesions only visible beneath a microscope. All of these symptoms are accompanied by extreme emotional distress, which is only exacerbated by the skepticism and even derision of medical professionals.

In 2001, stay-at-home mother Mary Leiato noticed strange growths on her toddler’s mouth. She initially turned to medical professionals for answers, but they couldn’t find anything wrong with the boy, and one eventually suggested that she might be suffering from Munchausen’s-by-proxy. She rejected this diagnosis, and began trawling through historical sources for anything that resembled her son’s condition. Leiato eventually stumbled across 17th-century English doctor and polymath Sir Thomas Browne, who offhandedly describes in a letter to a friend “’that Endemial Distemper of little Children in Languedock, called the Morgellons, wherein they critically break out with harsh hairs on their Backs, which takes off the unquiet Symptoms of the Disease, and delivers them from Coughs and Convulsions.” Leiato published a book on her experiences in 2002, and others who suffered from a similar condition were brought together for the first time. This burgeoning community found a home in online forums and chat rooms. In 2006, the Charles E. Holman foundation, which describes itself as a “grassroots activist organization that supports research, education, diagnosis, and treatment of Morgellons disease,” began hosting in-person conferences for Morgies, as some who suffer from Morgellons affectionately themselves. Joni Mitchell is perhaps the most famous of the afflicted, but it’s difficult to say exactly how many people have this condition.

No peer-reviewed study has been able to conclusively prove the disease is real. When fibers are analyzed, they’re found to be from sweaters and t-shirts. A brief 2015 essay on the treatment of delusional parasitism published by the British Medical Journal notes that Morgellons usually appears at the nexus between mental illness, substance abuse, and other underlying neurological disorders. But that doesn’t necessarily mean the ailment isn’t “real.” When we call a disease real, we mean that it has an identifiable biological cause, usually a parasite or bacterium, something that will show up in blood tests and X-rays. Mental illness is far more difficult to prove than a parasitic infestation, but no less real for that.

In a 2010 book on culturally-specific mental illness, Ethan Watt interviewed medical anthropologist Janet Hunter Jenkins, who explained to him that “a culture provides its members with an available repertoire of affective and behavioural responses to the human condition, including illness.” For example, Victorian women suffering from “female hysteria” exhibited symptoms like fainting, increased sexual desire, and anxiety because those symptoms indicated distress in a way that made their pain legible to culturally-legitimated medical institutions. This does not mean mental illness is a conscious performance that we can stop at any time; it’s more of a cipherous language that the unconscious mind uses to outwardly manifest distress.

What suffering does Morgellons make manifest? We might say that the condition indicates a fear of losing bodily autonomy, or a perceived porous boundary between self and other. Those who experience substance abuse often feel like their body is not their own, which further solidifies the link between Morgellons and addiction. Of course, one can interpret these fibers and crystals to death, and this kind of analysis can only take us so far; it may not be helpful to those actually suffering. Regardless of what they mean, the emergence of strange foreign objects from the skin is often experienced as a relief. In her deeply empathetic essay on Morgellons, writer Leslie Jamison explains in Sir Thomas Browne account, outward signs of Morgellons were a boon to the afflicted. “Physical symptoms,” Jamison says, “can offer their own form of relief—they make suffering visible.” Morgellons provides physical proof of that something is wrong without forcing the afflicted to view themselves as mentally ill, which is perhaps why some cling so tenaciously to the label.

Medical literature has attempted to grapple with this deeply-rooted sense of identification. The 2015 essay from the British Medical Journal recommends recruiting the patient’s friends and family to create a treatment plan. It also advises doctors not to validate or completely dispel their patient’s delusion, and provides brief scripts that accomplish that end. In short, they must “acknowledge that the patient has the right to have a different opinion to you, but also that he or she shall acknowledge that you have the same right.” This essay makes evident the difficulties doctors face when they encounter Morgellons, but its emphasis on empathy is important to highlight.

In many ways, the story of Morgellons runs parallel to the rise of the anti-vaccination movement. Both groups were spear-headed by mothers with a deep distrust of medical professionals, both have fostered a sense of community and shared identity amongst the afflicted, and both legitimate themselves through faux-scientific conferences. The issue of bodily autonomy is at the heart of each movement, as well as an epistemic challenge to medical science. And of course, both movements have attracted charlatans and snake-oil salesmen, looking to make a cheap buck off expensive magnetic bracelets and other high-tech panaceas. While the anti-vaxx movement is by far the most visible and dangerous of the two, these movements test the limits of our empathy. We can acknowledge that people (especially from minority communities, who have historically been mistreated by the medical establishment) have good reason to mistrust doctors, and try to acknowledge their pain while also embracing medical science. Ultimately, the story of Morgellons may provide a valuable roadmap for doctors attempting to combat vaccine misinformation.

As Jamison says, Morgellons disease forces us to ask “what kinds of reality are considered prerequisites for compassion. It’s about this strange sympathetic limbo: Is it wrong to speak of empathy when you trust the fact of suffering but not the source?” These are worthwhile questions for those within and without the medical profession, as we all inevitably bump up against other realities that differ from our own.

Expertise in the Time of COVID

photograph of child with mask hugging her mother

This article has a set of discussion questions tailored for classroom use. Click here to download them. To see a full list of articles with discussion questions and other resources, visit our “Educational Resources” page.

Admitting that someone has special knowledge that we don’t or can do a job that we aren’t trained for is not very controversial. We rarely hesitate to hire a car mechanic, accountant, carpenter, and so on, when we need them. Even if some of us could do parts of their jobs passably well, these experts have specialized training that gives them an important advantage over us: They can do it faster, and they are less likely to get it wrong. In these everyday cases, figuring out who is an expert and how much we can trust them is straightforward. They have a sign out front, a degree on the wall, a robustly positive Google review, and so on. If we happen pick the wrong person—someone who happens to be incompetent or a fraud—we haven’t lost much. We try harder next time.

But as our needs get more complicated, for example, when we need information about a pandemic disease and how best to fight it, as our need for that kind of scientific information is politicized, figuring out who the experts are and how much to trust them is less clear.

Consider a question as seemingly simple as whether surgical masks help contain COVID-19. At first, experts said everyone should wear masks. Then other experts said masks won’t help against airborne viruses because the masks do not seal well enough to stop the tiny viral particles. Some said that surgical masks won’t help, but N95 masks will. Then some experts said that surgical masks could at least help keep you from getting the disease from others’ spittle, as they talk, cough, and sneeze. Still other experts said that even this won’t do because we touch the masks too often, undermining their protective capacity. Yet still others say that while the masks cannot protect you from the virus, they can protect others from you if you happen to be infected, “contradicting,” as one physician told me, “years of dogma.”

What are we to believe from this cacophony of authorities?

To be sure, some of the confusion stems from the novelty of the novel coronavirus. Months into the global spread, we still don’t know much about it. But a large part of the burden of addressing the public health implications lies not just in expert analysis but how expert judgments are disseminated. And yet, I have questions: If surgical masks won’t keep me from getting the infection because they don’t seal well enough, then how could they keep me from giving it to others? Is the virus airborne or isn’t it? What does “airborne” mean in this context? How do we pick the experts out of this crowd of voices?

Most experts are happy to admit that the world is messier than they would prefer, that they are often beset by the fickleness of nature. And after decades of research on error and bias, we know that experts, just like the rest of us, struggle with biased assumptions and cognitive limitations, the biases inherent in how those before them framed questions in their fields, and by the influence of competing interests—even if from the purest motives—for personal or financial ends. People who are skeptical of expertise point to these deficiencies as reasons to dismiss experts.

But if expertise exists, really exists, not merely as a political buzzword or as an ideal in the minds of ivory tower elitists, then, it demands something from us.

Experts understand their fields better than novices. They are better at their jobs than people who have not spent years or decades doing their work. And thus, when they speak about what they do, they deserve some degree of trust.

Happily, general skepticism about expertise is not widely championed. Few of us — even in the full throes of, for example, the Dunning-Kruger Effect — would hazard jumping into the cockpit of an airplane without special training. Few of us would refuse medical help for a severe burn or a broken limb. Unfortunately, much of the skepticism worth taking seriously attaches to topics that are likely to do more harm to others than to the skeptic: skepticism about vaccinations, climate change, and the Holocaust. If you happen to fall into one of these groups at some point in your life — I grew up a six-day creationist and evolution-denier — you know how hard it is to break free from that sort of echo chamber.

But even if you have extricated yourself from one distorted worldview, how do you know you’re not trapped in another? That you aren’t inadvertently filtering out or dismissing voices worth listening to? This is a challenge we all face when up against a high degree of risk in a short amount of time from a threat that is new and largely unknown and that is now heavily politicized.

Part of what makes identifying and trusting experts so hard is that not all expertise is alike. Different experts have differing degrees of authority.

Consider someone working in an internship in the first year out of medical school. They are an MD, and thus, an expert of sorts. Unfortunately, they have very little clinical experience. They have technical knowledge but little competence applying it to complex medical situations.

Modern medicine has figured out how to compensate for this lack of experience. New doctors have to train for several years under a licensed physician before they can practice on their own. To acquire sufficient expertise, they have to be immersed into the domain of their medical specialty. The point is that not every doctor has the same authority as every other, and this is true for other expert domains, as well.

A further complication is that types of expertise differ in how much background information and training is required to do their jobs well. Some types of expertise are closer to what philosopher Thi Nguyen calls our “cognitive mainland.” This mainland refers to the world that novices are familiar with, the language they can make sense of. For example, most novices understand enough about what landscape designers do to assess their competence. They can usually find reviews of their work online. They can even go look at some of their work for themselves. Even if they don’t know much about horticulture, they know whether a yard looks nice.

But expertise varies in how close to us it is. For example, what mortgage brokers do is not as close to us as landscapers. It is further away from our cognitive mainland, out at sea, as it were. First-time home buyers need a lot of time to learn the language associated with the mortgage industry and what it means for them. The farther out an expert domain is from a novice’s mainland, the more likely they are on what Nguyen calls a “cognitive island,” isolated from resources that would let novices make sense of their abilities and authority.

Under normal circumstances, novices have some tools for deciding who is an expert and who is not, and for deciding which experts to trust and which to ignore. This is not easy, but it can be done. Looking up someone’s credentials, certifications, years of experience, recommendations, track records, and so on, can give novices a sense of someone’s competence.

As the expertise gets farther from novices’ cognitive mainland, they can turn to other experts in closely related fields to help them make sense of it. In the case of mortgages, for example, they might have a friend who works in real estate or someone in banking to help translate the relevant bits to us in a way that meets our need. In other words, they can use “meta-experts,” experts in a closely related domain who understand enough of the domain to help them choose experts in that domain wisely.

Unfortunately, during a public health emergency, uncertainty, time constraints, and politicization mean that all of these typical strategies can easily go awry. Experts who feel pressured by society or threatened by politicians can — even if inadvertently — manufacture a type of consensus. They can double-down on a way of thinking about a problem for the sake of maintaining the authority of their testimony. In some cases, this is a simple matter of groupthink. In other cases, it can seem more intentional, even if it isn’t.

Psychologist Philip Tetlock, in his book with Dan Gardner Superforcasting: The Art and Science of Prediction (2015), explains how to prevent this sort of consensus problem by bringing together diverse experts on the same problem and suspending any hierarchical relationships among them. If everyone feels free to comment and if honest critique is welcomed, better decisions are made. In Are We All Scientific Experts Now? (2014), sociologist Harry Collins contends that this is also how peer review works in academic settings. Not everyone who reviews a scientific paper for publication is an expert in the narrow specialization of the researcher. Rather, they understand how scientific research works, the basic terminology used in that domain, and how new information in domains like it is generated. Not only can experts in related domains allow us to challenge groupthink and spur more creative solutions, they can help identify errors in research and reasoning because they understand how expertise works.

These findings are helpful for novices, too. They suggest that our best tool for identifying and evaluating expertise is, rather than pure consensus, consensus among a mix of voices close to the domain in question.

We might call this meta-expert consensus. Novices need not be especially close to a specialized domain to know whether someone working in it is trustworthy. They only have to be close enough to people close to that domain to recognize broad consensus among those who understand the basics in a domain.

Of course, how we spend our energy on experts matters. There are many questions that political and institutional leaders face that the average citizen will not. The average person need not invest energy on highly specialized questions like:

  • How should hospitals fairly allocate scarce resources?
  • How do health care facilities protect health care workers and vulnerable populations from unnecessary risks?
  • How can we stabilize volatile markets?
  • How do we identify people who are immune from the virus quickly so they can return to the workforce?

The payoff is too low and the investment too significant.

On the other hand, there are questions worth everyone’s time and effort:

  • Should I sanitize my groceries before or when I bring them into my living space?
  • How often can I reasonably go out to get groceries and supplies?
  • How can I safely care for my aging parent if I still have to go to work?
  • Should I reallocate my investment portfolio?
  • Can I still exercise outdoors?

Where are we on the mask thing? It turns out, experts at the CDC are still debating their usefulness under different conditions. But here’s an article that helps make sense of what experts are thinking about when they are making recommendations about mask-wearing.

The work required to find and assess experts is not elegant. But neither is the world this pandemic is creating. And understanding how expertise works can help us cultivate a set of beliefs that, if not elegant, is at least more responsible.

MDs vs. NDs: On the Regulation of Naturopathic Medicine

photograph of stethescope and blood pressure pump

While 16 states, plus the District of Columbia and Puerto Rico, license naturopathic doctors, many physicians have expressed strong opposition against this practice. These physicians point to naturopathic treatment as an unsafe alternative to modern medicine, because they argue that Naturopathic Doctors (N.D.s) are not qualified to diagnose and treat illness. On the other hand, N.D.s want increased legitimacy within the field of holistic health to ensure that patients go to qualified practitioners. It is evident that physicians and N.D.s share a mutual goal: ensuring that patients receive quality care. However, the two parties have different ideas of how to promote the just treatment of patients: either recognize N.D.s as licensed Naturopathic Doctors, or bar them from that distinction, lumping them together with untrained practitioners. The ethical concern lies with ensuring that patients have the proper information needed to access just and safe treatment. For the good of all those involved we must ask: should N.D.s be licensed and formally recognized?

First, some critics have argued that people practicing naturopathy are not sufficiently trained in the medical field. Naturopathic medicine can be practiced in two different ways: by naturopathic doctors and by unlicensed naturopaths. While they both sit under the umbrella of naturopathy, the difference between these two practices is significant. While N.D.s graduate from a four year naturopathic school and receive a license from the Council on Naturopathic Medical Education, unlicensed naturopaths might receive informal training and are only qualified to make “general lifestyle” recommendations. N.D.s want to be recognized as legitimate medical practitioners to increase their agency and distinguish themselves from non-licensed naturopaths. Being recognized as medical practitioners would allow N.D.s the power to write prescriptions and conduct medical tests more freely, which would increase their influence over the treatment of their patients. Nevertheless, their desire for greater authority is based on concern for the well-being of patients: N.D.s are worried that patients might be going to naturopaths without understanding the distinction between naturopaths and N.D.s. 

Prospective patients needs to know that naturopaths are only trained to provide general lifestyle advice. Patients should not visit a naturopath for questions regarding specific ailments. Individuals who work as naturopaths must actively work to protect prospective clients by turning them away when their inquiries stretch beyond this scope. Prospective patients must also understand that N.D.s cannot replace physicians; believing so could prove a great risk to the patient’s well-being.

While there are guidelines for what naturopaths can and cannot do, this varies depending on individual states’ laws and regulations. Due to the relative novelty of naturopathy in the U.S, many people are unaware of the possible risks and benefits of its practice. This affects whether lawmakers believe that wider recognition for N.D.s would have a positive impact on patients’ health outcomes. A possible solution would involve a commitment to patient education, prioritizing the agency of individuals by promoting free and ample access to information. If people are equipped to make truly informed choices, they can decide whether they best belong at the M.D., N.D., or naturopath’s office. Free and equitable access to information would mean that people are less at risk of being harmed without their knowledge. The issue with this suggestion, however, is that universal access to information is not a reality. For this reason, how N.D.s are recognized matters.

Organizations like the American Academy of Family Physicians oppose a special distinction for N.D’s, because they argue that it might assert an equal status between N.D.s and physicians. This, they argue, would put patients at risk. They point out that physicians attend medical school upwards of ten years, while N.D.s undergo nearly half of that. The AAFP outlines the difference they perceive in the training of family physicians and naturopaths. They include the similarities/differences between the two programs of study:





What the table above illustrates is that, by the standards used by the AAFP, physicians receive training for a longer period of time and are vetted as possible candidates for a degree with more rigor. For physicians, it is problematic to identify those who practice both fields under the same label, because it fails to appreciate the sizable difference in qualifications of the two professions. Physicians are trained in many subjects that N.D.s are not; this is significant when discussing an individual’s health outcomes. There is a concern that recognizing N.D.s as legitimate medical practitioners actually puts patients at a greater risk, because they are making decisions based on a lie. The “lie” being that a patient can go to physician or N.D regardless of the medical problem, since both professionals have the same expertise.

It should be clear that physicians and N.D.s do not possess the same knowledge. Both fields distinguish themselves as different from each other, and N.D.s continue to recognize the need for physicians, in cases requiring surgery, for example. Some N.D.s even specify that patients should seek advice from their doctors when they seek naturopathic care. N.D.s do not desire to obtain an equal status to physicians, which should appease many. Instead, N.D.s would like their title to reflect the services they can provide and distinguish them from those who merely offers advice as naturopaths.

N.D.s insist that without more public legitimacy, people might go to unlicensed naturopaths thinking they are consulting someone with a greater level of professional training and education. The reality is that a proper solution is not clear, and there is ambiguity regarding what policy best protects the safety of patients, a common value or goal shared by both “sides.” But the parties have strong beliefs about the proper way to reach that goal and, unfortunately they don’t coincide. The hope is that by evaluating where opponents are coming from and what they care about, we can begin to draw out common interests. Then, these common interests have the potential to lead to collaborative decision-making about action steps.

In this case, physicians and N.D.s seek to protect patients and promote their well-being. While N.D.s would like more recognition that legitimizes their practice as more legitimate, physicians oppose this. If physicians don’t believe N.D.s possess sufficient knowledge, it is interesting to consider whether they would like N.D.s to receive more training or have stricter regulation on what they can treat. Naturopathy has been around for thousands of years all over the world, and its recent surge in popularity within the U.S points to its time-tested resilience. Furthermore, it will become increasingly necessary to investigate how Naturopathic medicine can be integrated among the other branches of medicine as its influence increases. The way we label the field and its practitioners will have serious consequences going forward.

“Unbearable Suffering” and Mental Illness

Photograph of a single bed with a curtain and chair

Trigger warning: suicide attempts, multiple mental illness mentions

This article has a set of discussion questions tailored for classroom use. Click here to download them. To see a full list of articles with discussion questions and other resources, visit our “Educational Resources” page.

List of international suicide hotlines: http://ibpf.org/resource/list-international-suicide-hotlines

Aurelia Brouwers’ Instagram bio is terse and pointed: “BPD, depression, PTSD, anxiety etc. Creative. Writer. Gets euthanasia Januari [sic] 26. Fights till then for this subject.”

Brouwers was a twenty-nine year old Dutch woman who suffered from multiple mental disorders. She received her first diagnoses of depression and Borderline Personality Disorder at the age of twelve. As she recounts: “Other diagnoses followed – attachment disorder, chronic depression, I’m chronically suicidal, I have anxiety, psychoses, and I hear voices.” After an estimated twenty failed suicide attempts, Brouwers thought she found the solution to her suffering via euthanasia or physician-assisted suicide (EAS). EAS has been legal in the Netherlands since 2002, but Brouwers faced obstruction as her request was refused by multiple doctors. She finally turned to The Hague’s End of Life clinic, which approved her request and set a date for January 26 of this year. Scenes from Brouwers’ last fortnight of life were recorded by RTL Nieuws journalist Sander Paulus, who noted the young woman’s ongoing mental distress as well as the conviction with which Brouwers anticipated her euthanasia date. Footage featured by the BBC shows Brouwers collectedly making plans for her cremation ceremony with a funeral consultant. On January 26, surrounded by loved ones and two doctors, Brouwers consumed a liquid poison and “went to sleep.”

Brouwers’ case stoked vigorous debate in the Netherlands and elsewhere regarding the intent of euthanasia legislation. Her youth is one point of contention. Another factor is the nature of her affliction. In the discourses following Brouwers’ life, we see evidence of an assumed distinction between physical and psychiatric disorders. Journalist Harriet Sherwood went so far as to note in the tagline for her Guardian article that ”there was nothing wrong with her [Brouwers] physically.”

While psychiatric disorders are still primarily diagnosed via mental and behavioral markers, it is not strictly correct to assume that mental health disorders lack physical foundations. Often, the ways in which we speak of mental disorders reveal our imperfect knowledge of the biological elements (as differentiated from the more traditionally observed psychosocial components) of mental disease. This relative ignorance exists in part because researching biomarkers for psychiatric disease is a complex undertaking. What is known is that mental illnesses can often be life-long conditions that require ongoing treatment, treatment that appears to have been provided in Aurelia Brouwers’ situation.

The 2002 Dutch act exempting physicians from prosecution in specific EAS cases requires ”due care” by the attending doctor. This includes ascertaining unbearable suffering on the part of the patient without hope of improvement. The Netherlands is joined in this relatively open model by other European nations, including Belgium, Luxembourg, and Switzerland. Several American states, the Australian state of Victoria, and Canada also allow EAS, but in much more restricted circumstances mirroring the “Oregon model,” which stipulates a terminal illness with established life expectancy.

Arguments in favor of euthanasia often rest on the basis of respect for individual autonomy and on compassionate grounds. Here, for the sake of simplicity, I assume ethical assent to these grounds in support of voluntary euthanasia or physician-assisted suicide which is at the informed, long-standing behest of the patient. This is the only form of active euthanasia currently legal anywhere (whereas what some call ”passive” euthanasia or the withdrawal of futile treatment is considered to be normal medical practice). These moral justifications – autonomy and compassion – are taken as reasonable in states in which EAS is legalized. In the Netherlands, however, where EAS has been legal for sixteen years, Brouwers was initially refused by several doctors, and garnered national attention. Why?

Brouwers’ example seems to challenge notions of what constitutes “unbearable suffering,” impossibility of improvement, and “terminal” conditions. Popular conceptions of mental illness present it as something that one can “overcome” through patience or willpower, although the same perceptions do not apply to a broken bone or a cancer diagnosis. Dutch psychiatrist Dr. Frank Koerselman, speaking to the BBC, notes that Borderline Personality Disorder, from which Brouwers suffered, is known to decline in severity after the age of 40. But BPD was only one of Brouwers’ multiple diagnoses, which taken together, caused her immense suffering. Along these lines, some argue that her mental disease was itself terminal, as does Kit Vanmechelen in the BBC article. Brouwers had already engaged in numerous, though incomplete, suicide attempts.

What happens, though, when we allow EAS for psychiatric suffering as well as physical suffering (the more traditionally accepted justification)? As a society, our understanding of mental suffering does not seem to be as advanced as that of physical suffering (only recently was it discovered that emotional pain activates neural correlates similar to physical pain).

Many believe that it is a mistake to open this door. Dr. Koerselman opposes EAS for psychiatric disorders, in part because he posits it is not possible to distinguish a rationalized decision to die from a symptom of mental disease itself. On the other hand, a recent study of Belgian mental health nurses’ attitudes toward euthanasia for unbearable mental suffering found a widely positive response. Nurses were the subjects for this study because of their closeness to patients’ lives and frequent role as intermediate and advocate between patients and doctors.

Ethics is about individual cases, as well as the general principles that they reveal or elicit along the way. The case of Aurelia Brouwers is undeniably a tragic one, although Brouwers herself appeared to find some peace in her capacity to make an informed choice, supported by medical care. But what her life surely reveals is that we need to invest more in exploring the genesis and maintenance of mental disorders within our societies. One in four people world-wide will suffer from some form of mental illness. We need to invest more in understanding the biological bases of mental illness, as well as the social structures that are implicated in psychiatric disorders’ psycho-social components.  In the words of Brouwers, “I think it’s really important to do this documentary [of Brouwers’ life] to show people that mental suffering can be so awful that death, in the end, is the lesser of two evils.” As a society, we need to do better by those who experience mental pain.

The Opioid Crisis and America’s Homegrown Cartels

photograph of a pill bottle with pills spilling out

The “crisis” of drugs in United States, dating at least to the “war” that Richard Nixon declared on “public enemy number one” in 1971, has seemingly become a permanent frame of our political life. After trillions of dollars spent and decades of chaos produced in Latin America, we have reached a point where the language of “crisis,” largely directed outside to other “sources,” seems to have moved home. But to what? Since 2016, drug overdoses have become the leading cause of death in America, 2/3 of which are related to opioids (a larger class that includes both plant-derived substances like heroin and semi-synthetics like oxycodone). For many, statistics like this are not necessary to recognize that, no matter which way you put it, the opiate crisis is our crisis. But how far are we willing to go in recognizing our complicity in it? Many will have to continue to deal with overdoses, withdrawal, relapse, and an unfortunate number of deaths. Socially, we should be questioning the corporate, marketing, and governmental practices that have reaped billions of dollars from an epidemic that is largely homegrown. Continue reading “The Opioid Crisis and America’s Homegrown Cartels”

The Ethics of Human Head Transplants Explored: Part Two

Black and white photograph of a medical student examining a person on a table

In a previous post, I explored several ethical questions arising out of the work of renegade surgeons pushing to conduct the first “human head transplant.” One remaining but intriguing conundrum concerns the identity of the person who would emerge from the transplant, should it prove to be successful. The radical nature of the surgery places some doubt as to who legitimately is the “donor” and who the “recipient.” The surgery is commonly referred to as a “human head” transplant, possibly because we are used to seeing small, discrete organs as the objects of donation. However, note that this moniker seems to get it backwards, at least in terms of how the surgeons and potential participants understand the surgery. It is the original owner of the head who is understood to be receiving a new body as donated organ. Thus, the surgery should go by the name “whole body” transplant. Continue reading “The Ethics of Human Head Transplants Explored: Part Two”

The Ethics of Human Head Transplants Explored: Part One

Doctor inspecting a patient on an operating table

They are not just plot points in bad horror films anymore. Real surgeons and medical doctors are currently exploring the feasibility of human head transplants. In fact, surgeons Sergio Canavero and Xiaoping Ren claimed in November 2017 that such a transplant was “imminent.” The surgery did not happen, but these two surgeons still claim they intend to perform a human head transplant.

Theoretically, in a human head transplant procedure, a special blade made from diamonds would be used to sever the spinal cord of the donor and recipient as cleanly as possible. The detached human head would be kept alive for a period of time at a very cold temperature and hooked up to pumps for oxygen and blood flow. The spinal cords from the donor and recipient would then be fused together using polyethylene glycol. Vertebrae, blood vessels, muscles, and organs would then be stitched together as well. The person would then be placed into a month-long coma, while blood and nerve networks are re-built, in hopes that the body does not reject the new head (or vice versa).

This whole proposal may sound absurd to you; multiple surgeons and doctors have also questioned on scientific grounds Canavero’s and Ren’s proposals for the procedure. Dean Burnett, neurosurgeon and columnist for The Guardian, writes, “The human body is not modular. You can’t swap bits around like you would Lego blocks, take a brick from castle and put it onto a pirate ship and have it work fine.” Burnett argues that one’s brain develops along with one’s body; as such, a relatively unique interface develops between the two. Simply put, no one knows what would happen between a brain and a body that do not share this interface that was built up through years of growth. The results may be traumatic and tragic.

What’s more, the experimental testing and preparation for a human head/body transplant by Canavero and Ren is quite weak. Canavero and Ren have conducted experiments transplanting rat heads onto rat bodies. Disappointingly, one of these studies involved 60 rats, but only 14 survived for any period longer than 36 hours. They have also claimed to have successfully re-fused the severed spinal cords of a dog and a monkey, but scant evidence has been published to back up these claims. Burnett notes that, in the monkey head transplant, the monkey never regained consciousness after the procedure and only survived for twenty hours after the procedure.

Numerous ethical questions, obviously, emerge from the prospects of human head transplants. As Paul Root Wolpe on Vox suggests, would attempting the surgery on humans at this stage be tantamount to murder? The attempted surgery would likely result in death for the human patient (or at best life in a persistent vegetative state), should it fail. Given the paucity of experimental evidence backing up the safety and efficacy of the surgery, one has little rational justification for believing the surgery, at this stage of development, would even succeed. Defenders of the doctors might reply that the proposed head transplant is offered as a last chance procedure for someone suffering from a degenerative terminal neurological disorder. The intent of the surgery is not to end the life of the person, but rather to save it. As long as the doctors do not manipulate the patient to consent to this radical procedure when other safer options still exist, a human head transplant would be as ethical as any other Hail Mary last chance medical procedure.

Terminal patients may have other life-affirming and important choices to make that would be forsaken should they choose to gamble with such a radical procedure, such as saying goodbye to loved ones, making psychological peace with death and oneself, and having control over ending one’s life in a personally dignifying manner. The doctors advocating for trying this surgery on a degenerative terminal patient might not have the patient’s best interests at heart. In addition, it is not clear if the decision to volunteer for this procedure (at its current stage of development) could be considered rational. While respect for a patient’s decisions is generally important, some obviously harmful and irrational decisions do not accord such respect. A patient who believed that an obviously harmful action would cure him a disease, say ingesting large amounts of a strong poison, should probably be stopped from carrying out this action. Having your head cut off in hopes of a successful head transplant may be considered analogous.

Another important moral question concerns fairness and the allocation of organs. There is a severe shortage in viable transplantable organs in the United States. According to the United Network for Organ Sharing (UNOS), twenty people on average die each day while waiting for an organ transplant. What’s more, one organ donor can save up to eight lives. If a person were to donate their whole body for transplant, rather than their individual organs, that would theoretically deprive seven needy people of viable organs. Another allocation issue concerns cost: the head transplant procedure’s cost was estimated at $100 million USD. It may seem unfair to spend that much money on the vanishingly small likelihood of saving one person, considering what this amount could do for many more people.

Presume, now, that the above moral and scientific questions are overcome, and head transplants become a real (if not regular) part of the medical community’s transplant procedures. We are still left with an intriguing metaphysical question, one that would have serious ramifications for morally and legally fraught issues. What person would emerge from the procedure? The assumption is that the person to whom the head originally belonged is the “recipient” of the transplant, and the person from whom the body came “the donor.” But, is this correct? Is there any basis for conceiving of it the other way around? More intriguingly, it may be that the resulting person after the procedure is a third person metaphysically distinct from either the donor or the recipient. These issues will be discussed in a follow-up post.

The Transplant Scenario in Fiction and Film

A photo of an operating room during surgery

Ethicists make many uses of the story of the transplant surgeon—the surgeon who uses one healthy patient as an organ bank and saves five lives.  Surely this must be a villain, not a hero, but why? Most of us think it would be right, not wrong, to flip a switch so a train didn’t head toward five people lashed to a track but instead toward one. The scenario helps raise questions about killing and letting die, doing and allowing, and also poses a problem for act utilitarianism, which assesses actions in terms of outcomes.  

Continue reading “The Transplant Scenario in Fiction and Film”