Center Professor Leonard Fleck, PhD, has had two articles published so far this year. Online ahead of print is “Precision medicine and the fragmentation of solidarity (and justice)” in the European journal Medicine, Health Care and Philosophy. In the article Fleck “offer[s] multiple examples of how current and future dissemination of […] targeted cancer drugs threaten a commitment to solidarity.”
Fleck and co-author Leslie Francis, PhD, JD, were published in the most recent issue of Cambridge Quarterly of Healthcare Ethics. Their article debates the question: “Should Whole Genome Sequencing be Publicly Funded for Everyone as a Matter of Healthcare Justice?”
In the February issue of Studies in History and Philosophy of Science, Center Director and Associate Professor Sean Valles, PhD, has a reply by the author in response to reviews of his 2018 book Philosophy of Population Health: Philosophy for a New Public Health Era. The book forum section of the issue includes three reviews of Valles’ book from Eric Mykhalovskiy, Quill R. Kukla, and Ross Upshur.
By Larissa Fluegel, MD, MHS, and Sean A. Valles, PhD
The U.S. COVID-19 pandemic summer surge has inspired a public search for answers as to why wide vaccine availability has not been sufficient to prevent a new wave of infections. Certain answers are plausible, such as blaming the surge on some combination of the more infectious delta variant spread, vaccination rates remaining too low on average and excessively low for some populations, a relaxation of formal disease control restrictions, as well as more nuanced informal social habits such as diminished mask-wearing, more indoor parties, etc. Yet others cast blame onto a much less plausible target: immigrants.
Florida Governor Ron DeSantis blames President Joe Biden for being too lax on the southern U.S. border immigration enforcement, suggesting that Biden has been “helping [to] facilitate” the pandemic. Governor Greg Abbott of Texas took things further, ordering that state law enforcement could “begin pulling over vehicles whose drivers are transporting migrants who pose a risk of carrying COVID-19.” Both of these responses to the pandemic spread are unethical, incoherent, and ineffectual. Accusations against Latin American immigrants are unethical and misguided.
For many reasons, blaming those immigrants crossing the southern U.S. border for negative health outcomes is problematic. Such targeted blame is dehumanizing to immigrants—it promotes negative stereotypes that perpetuate discrimination, mistreatment and health disparities, and by extension, it is detrimental to non-immigrants’ health. Moreover, it is a form of blame shifting that prevents authorities and the public from effectively taking responsibility for community-wide problems.
Image description: a black and white photo of an individual holding a sign that reads “Hamilton was an immigrant. Einstein was a refugee.” They are wearing a long jacket and a tricorne hat. Image source: Victoria Pickering/Flickr.
Blaming immigrants is dehumanizing
There is a long history of dehumanizing immigrants to the U.S., although such dehumanization is generally done selectively. Immigrants such as Charlize Theron and Albert Einstein are treasured, while others are despised for having the “wrong” skin color, accent, occupations, and so on. Dehumanizing and targeting immigrants has been part and parcel of U.S. history, from 19th century church-burning riots that terrorized Irish immigrants, and the overtly racist Chinese Exclusion Act, to current cases of medical abuse and neglect in migrant detention centers. Philosopher David Livingstone Smith traces these sorts of systemic cruelties to a process of dehumanization in which we find ways of convincing ourselves to think of certain groups of people as somehow less than human. To convince ourselves we seek justifications such as depicting immigrants as vermin infecting or invading a country. According to Livingstone Smith, such depictions then give us permission to act aggressively against those groups and to “exclude the target of aggression from the moral community.”
In sum, we find ways to give ourselves permission to dismiss the ethics of how we treat certain groups of people. With such misplaced permission, we decide that certain groups, in this case select immigrants, don’t count as fellow humans worth caring about, and so abuse doesn’t really count as abuse. It’s this sort of misguided logic that also explains Governors Abbott and DeSantis’ school mask requirement bans. Paradoxically, their purported attempt to reign-in government restrictions on individuals simultaneously reveals disregard for the ways in which harsh immigration enforcement strategies negatively impact the lives of immigrants.
Blaming immigrants promotes negative stereotypes that perpetuate discrimination, social mistreatment, and unjust health disparities. Since early in the pandemic, anti-Asian racism and xenophobia mixed in with COVID-19 politics has led to a worldwide phenomenon of hate crimes against anyone appearing to be of Asian descent, and vicious expressions of misguided blame directed at anyone from the same vague region as where the pandemic originated. Historically, and erroneously, people in the U.S. have associated immigrants with human disease and contagion. Immigration authorities have long scrutinized immigrant health when deciding who can enter or remain in the U.S. Additionally, there is a false perception that immigrant illnesses are predominantly acquired before entry to the U.S.; it is instead most often the case that immigrants tend to struggle with worsening health as they spend more time adopting U.S. cultural norms, including unhealthy eating habits.
Stereotypes about “unsanitary” immigrants represent cruel and unjustified blame shifting. For example, consider meat processing plants which have been hot spots for COVID-19 outbreaks. Staffed predominantly by an immigrant workforce, those workers face abusive and unsanitary working conditions (an open secret in the industry for over a century) that foster disease outbreak. Laying blame for this suffering on immigrant workers, or immigration generally, is a horrendous ethical mistake. Statements by public figures like Governors Abbott and DeSantis contribute to morally skewed views about immigrant health.
Unhealthy negative stereotypes hurt people and cost all Americans a lot of money
Another pragmatic consideration is how those immigrants who do fall ill interface with the U.S. health care system. Negative stereotypes about immigrants among health care providers lead to substandard and/or improper care. In fact, the anticipation of being mistreated coupled with fear among those with an undocumented immigration status serve to dissuade immigrants from seeking needed care. Such fears might even discourage some from getting the COVID-19 vaccine. In this way, blaming immigrants contributes to worsening the pandemic. (A related irony is that nearly 1 in 3 doctors are themselves immigrants.)
There is a public health concern to this sequence. Delaying or avoiding care harms immigrants as well as those around them. To avert transmission, contagious diseases need to be treated in a timely manner. Not doing so leads to an underestimation of actual disease distribution and burden. A correct estimation is necessary to determine the right amount of resources and timely measures necessary to contain them. It is a waste of public resources to have those in need use emergency rooms for care that, if identified and delivered in a timely manner, could have been averted before the situation worsened. Part of the motivation for the Affordable Care Act was to increase access to regular necessary care, yet undocumented immigrants were excluded from benefitting from the Act, despite the fact that providing coverage would have improved public health and probably saved the public money as well. For example, consider strep throat, a condition that is easily treatable with inexpensive antibiotics. Left untreated, strep throat can get complicated and potentially cause serious long-term heart problems. Untreated strep throat might drive a person to seek care in an emergency department. Yet another example is an untreated dental cavity that might lead to a dental abscess or a deep skin infection of the mouth and neck, again possibly resulting in an emergency room visit. Once there, correct diagnosis would require fluid cultures and expensive MRI or CT imaging. The cost of delayed care is borne by all of us. Some combination of insurance companies, hospitals, or government pay those excess fees, passing along costs to everyone else.
Speaking out
It is unfortunately fashionable across the U.S. and Europe to blame immigrants for social problems. Economic and social problems are quickly blamed on immigrants. Conversely, the available evidence points to immigrants being economically and socially beneficial to their respective new country.
We, the authors, come to this issue as people who have committed their professional lives to making healthcare and health policy more humane—seeking to help our future physicians and our colleagues treat patients as complex human beings deserving of care, rather than revenue streams to be maximized. Similarly, we see immigration discussions falling prey to the same mistake so common in healthcare, wherein powerful decision-makers, such as politicians, lose sight of their shared humanity with the people whose lives depend on them. We need to demand better from our political leaders and importantly, we need to speak out when politicians dehumanize immigrants.
Larissa Fluegel, MD, MHS, is an Assistant Professor with the Center for Bioethics and Social Justice and the College of Human Medicine at Michigan State University where she teaches social context of clinical decisions.
Sean A. Valles, PhD, is Associate Professor and Director of the Michigan State University Center for Bioethics and Social Justice. He is author of the 2018 book Philosophy of Population Health: Philosophy for a New Public Health Era (Routledge Press).
Join the discussion! Your comments and responses to this commentary are welcomed. The authors will respond to all comments made by Thursday, September 2, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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“Housing security’s place in a ‘Culture of Health’: Lessons from the pandemic housing crises in the U.S. and England”
Center Director and Associate Professor Sean A. Valles, PhD, gave a seminar last month for The London School of Economics and Political Science Department of Philosophy, Logic and Scientific Method. Valles presented “Housing security’s place in a ‘Culture of Health’: Lessons from the pandemic housing crises in the U.S. and England” as part of the department’s “Conjectures and Refutations” series.
Dr. Valles has provided a summary of his talk below. A recording is available to watch on YouTube via the LSE Philosophy channel.
People experiencing homelessness had been suffering extreme health and economic hardships before the COVID-19 pandemic, and even more so during it. The notion that housing is a human right is gradually picking up momentum in both the U.S. and England. And that ethical recognition is combining with a growing set of scientific evidence of the effectiveness of “housing first” policies, which provide stable long-term housing to people experiencing homelessness, rather than shuffling people in and out of temporary shelters. Every person ethically deserves safe housing, and failing to provide this has also resulted in a system that cruelly (and at great expense) pushes suffering people into emergency rooms and prisons.
England earned praise for its “Everyone In” program, which was aimed to provide safe housing for every person experiencing homelessness beginning early in the pandemic. By contrast, cities across the U.S. continued defying CDC recommendations by bulldozing temporary encampments set up by people experiencing homelessness, including in Lansing. Meanwhile both the U.S. and England banned evictions of renters who fell behind on their rent during the pandemic, but both also failed to make realistic long-term plans for how to secure housing and income for people who have no way of paying past-due rent once the eviction bans expire. On both sides of the Atlantic, the pandemic inspired governments to stumble toward recognizing how essential housing is for good health in general and also dealing with this fact. The challenge now is to keep up the momentum, and push for universal housing, since trying to survive without secure housing was already difficult before the pandemic, and will remain so after it ends.
As the COVID-19 pandemic continues to maim and kill thousands and devastate countless others, many are pinning their hopes of returning to a life resembling normal upon the development of a vaccine. The Centers for Disease Control and Prevention has even advised states and cities to be prepared to allocate up to 800 million doses of a vaccine in late October or early November. But it is highly unlikely that a vaccine will do much to stop the pandemic and related significant harm. For a vaccine to get us out of the pandemic, it needs to be developed, distributed, and received. Regardless of its development and distribution, if people don’t take it, then it won’t do any good. And there isn’t much reason to think that many people will take it, at least initially.
Image description: an illustration of a bottle with a white label that says “COVID-19 Vaccine” in black text. The bottle is different shades of blue with a dark blue background. Image source: Shafin Al Asad Protic/Pixabay.
Allocation Models
Recently, a team of scholars advocated for a scheme to allocate the eventual vaccine, the Fair Priority Model. This model, like most models of allocation, assumes that the vaccine will initially be scarce. On this assumption, the allocation then proceeds in phases, the first preventing the most significant harms such as death, the second preventing other serious harms and concomitant economic devastation, and the third addressing community transmission. Other models may set different priorities by, for example, putting health care workers or racial and ethnic minorities first in line.
Developing allocation models is important. But they all rest on a questionable assumption: that the people to whom the vaccine is allocated actually want it, or are at least willing to take it. Scarcity is just as much a matter of demand as it is a matter of supply.
Demand for a Vaccine
Recent evidence suggests that, generally, people won’t take the vaccine initially, even if offered. Almost 80% of people said they wouldn’t get it, if available, at least until others have done so, according to a recent CBS News poll. A return to something resembling normal life requires around 70-80% of the population to be immune.
Mistrust of the politicization of vaccine development or of the scientific practices involved may be responsible for much of the population’s apparent hesitation. But reasonable people may also simply not want to be first in line for a new immunity enhancer. Thus, whatever criteria are used, the allocation scheme must incorporate consideration of demand, not simply supply.
For example, the first allocation according to the Fair Priority Model should go to those people whose being vaccinated would most likely prevent death and who want the vaccine. If the vaccine is allocated to health care workers, the allocation must be to people who are health care workers and who want the vaccine. That is, demand for a vaccine should be just as much a component of allocation models as any other consideration.
Voluntary or Compulsory?
Allocation models must consider the population’s demand for a vaccine in order for such models to provide useful guidance on distribution. Given the apparent lack of demand, giving people the choice of whether to take the vaccine is unlikely to stop the pandemic any time soon. But demand only matters if people have an option. One way to avoid having to consider the population’s willingness to take the vaccine, and to dramatically decrease the time it takes to boost 70-80% of the population’s immunity, is to take that willingness out of the equation and make it compulsory.
Already some vaccinations are compulsory, depending on a person’s circumstances. Some have argued that the COVID-19 vaccine should be mandatory. One common principle in philosophy is that ought implies can. This means that what one’s moral obligations are hinges on what one can do. Even if one can justify compulsory COVID-19 vaccination, it’s unlikely that this is something that can be achieved. Compulsory vaccination is not something we can do, which means it’s not something we should do.
Consider, for example, the widespread reluctance to wear a mask and the flouting of social distancing guidelines. Wearing masks and social distancing are very minor burdens to bear for others’ well-being. While it is true that mask and social distancing mandates push against unrestrained permission to do what you want when you want to do it, others be damned, these intrusions are arguably minor (though are admittedly disruptive). Requiring 70-80% of the population to go someplace and get poked by a needle on multiple occasions or sprayed in the nose are much greater liberty intrusions. It is a pipe dream to think that a vaccine mandate would be accepted by the very same population who refuses to bear the more minor burdens of mask wearing and social distancing, which amounts to at least 29% of the population, enough to undermine our ability to stop the pandemic.
Different Baskets for Our Eggs
If administration of the COVID-19 vaccine is voluntary, not enough people will volunteer to get it. If administration is mandatory, still not enough people will get it. The vaccine’s allocation can only be either voluntary or mandatory. Either way, not enough people will get it, at least at first. The only conclusion to draw is that a vaccine is not going to stop the pandemic, at least any time soon. If ought implies can, we ought not pin our hopes upon a vaccine, because we cannot hope for it to work to stop the pandemic. There is no light at the end of the tunnel.
Image description: a narrow tunnel between two brick walls that leads to darkness. Image source: Peter H/Pixabay.
However, incentives and disincentives can change a person’s mind. Other than the incentive intrinsic to getting the vaccine—the preservation of human life and well-being—are there others that might make people more willing to get it, such as money or tax breaks? Or are there disincentives to vaccine refusal that might convince someone it is better to get it than it is to refuse? Carrots or sticks?
If neither, then we’re in for the long haul.
Parker Crutchfield, PhD, is Associate Professor in the Program in Medical Ethics, Humanities, and Law at the Western Michigan University Homer Stryker M.D. School of Medicine, where he teaches medical ethics and provides ethics consultation. His research interests in bioethics include the epistemology of bioethics and the ethics of enhancement, gene editing, and research.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, October 8, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Preventing Harm
Suppose your colleague was diagnosed with tuberculosis on Friday but tried to come into work on the following Monday. You would be right to call local public health officials, and they would be warranted in isolating him. Now suppose instead that he was diagnosed with lung cancer on Friday but came into work Monday. You would be wrong to call local public health officials and they would be wrong to isolate him. When a person’s health or behavior are a threat to others’ well-being, there is greater moral justification for restricting the liberties of that person. This is just the converse of Mill’s Harm Principle, which states that the only time it is permissible to restrict a person’s actions is when those actions threaten to harm another person.
Recently, the Australian Medical Association declared climate change a threat to the public’s health. This comes after a similar declaration was backed by organizations such as the American Medical Association, the American College of Physicians, the American Academy of Pediatrics, and the American Lung Association. Climate change is a health emergency that threatens the health and well-being of the public. Just as your colleague is a threat to the health and well-being of those around him, climate change is a threat to the public’s health and well-being. Thus, Mill’s Harm Principle applies—in principle it is permissible to restrict liberties to prevent the harm that ensues from climate change.
Public Health Ethics
When your colleague sees his oncologist about his lung cancer, the physician likely prioritizes the patient’s well-being. But public health ethics takes a more utilitarian approach: the individual’s interests are secondary to the greater good. Instead of balancing values such as patient autonomy and the physician’s judgment about what is most medically appropriate, public health ethics primarily balances liberty, equality, and utility (benefit). This to say that, for example, one person’s liberty may be justifiably restricted so that greater utility to the public may be achieved, or that it may be permissible to sacrifice some utility so that everyone can be subjected to the same treatment. Other values such as transparency or solidarity may be incorporated secondarily.
Image description: A large stack billows dense smoke into the air that appears pink against blue sky. Image source: Billy Wilson/Flickr
Viewing climate change through the lens of public health ethics, which interventions best balance liberty, equality, and utility? There is significant disutility of not doing anything—there will be incalculable harm to very many people. The cost of doing nothing is so high that there is almost no benefit we might achieve presently that could outweigh it. Trading the harms we will suffer by doing nothing for the benefit we might achieve by doing nothing is a bad deal for us and a much worse deal for the next generation.
It is not commonly noted, but the same could be said for liberty—by doing nothing we trade future liberties for present ones. If we want to promote liberty in the future, we need to restrict it now. Currently those who are best positioned to intervene on climate change enjoy an extensive scheme of liberties. We can cool our houses to 68 degrees in the middle of summer; we can travel by jet to anywhere we might want to go; we can preserve our food in disposable plastic containers; we can mostly go outside without fear of catching a mosquito-borne illness; we can even use plastic rather than paper straws!
Inaction and Liberty
If we do nothing in the name of preserving these liberties, we stand to lose much more. It’s pointless to travel by jet to a place that’s underwater or that’s so hot it could kill you, to say nothing of the prospects of actually living there. When the changing climate displaces those living in New Orleans, Phoenix, Miami, the mid-Atlantic, or anywhere else in the world that will be uninhabitable, those people have to go elsewhere, increasing population density in those areas. Cooling our residences and workplaces may be prohibitively expensive, along with refrigerating our food, manufacturing plastic straws, or going outside in shorts and a t-shirt. Such effects will only exacerbate social inequalities.
Or consider the worst-case scenario, one in which climate change exerts too much pressure on governments, undermining their ability to uphold the laws that democracies have agreed to, such as laws prohibiting taking another person’s stuff. In such a scenario one’s scheme of liberties might be as extensive as it could possibly be. But in that case life is solitary, poor, nasty, brutish, and short—all conditions that make it impossible to exercise those liberties and that significantly limit one’s self-determination. The dead have no liberties. For people who want to preserve and promote individual liberty, it makes sense to intervene now.
To What Extent?
If ethical intervention upon threats to the public’s health requires finding the best balance of liberty, equality, and utility, then we have justification to restrict present liberties. Doing so not only promotes greater future utility, but it also promotes greater future liberties. I have not addressed equality, but as things stand now doing nothing will exacerbate social inequalities. But to what extent can present liberties be restricted?
Image description: two brown and white cows are shown within a crowded group of cattle. Image source: Beatrice Murch/Flickr
Given the severity of the threat climate change presents to future liberties, it may be reasonable to prohibit air travel, driving vehicles that fail to meet certain emissions standards, eating beef, or even using plastic straws and incandescent light bulbs.
I mention above that there are other values that may be considered. If it is permissible for states—in the name of public health—to restrict present liberties to promote future liberties, how can they do so transparently? Does restricting present liberties promote or undermine solidarity among the population? If restricting present liberties undermines solidarity, does it do so to the degree necessary to outweigh the promotion of future liberty, equality, and utility?
Parker Crutchfield, PhD, is Associate Professor in the Program in Medical Ethics, Humanities, and Law at the Western Michigan University Homer Stryker M.D. School of Medicine, where he teaches medical ethics and provides ethics consultation. His research interests in bioethics include the epistemology of bioethics and the ethics of enhancement, gene editing, and research.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, October 10, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Over the past month, mass shootings have occurred in Gilroy, CA, in Chicago, in El Paso, and in Dayton. Most recently, the FBI has arrested a man in Las Vegas who had been planning a shooting spree. It’s common, after such a shooting occurs, to speculate about the mental health of the shooter. In a way, this is understandable: we cannot help but feel that anyone who could do such a thing is not mentally well. We can’t imagine what it would be like to be someone who is capable of meticulously planning and carrying out a mass killing like the one in Charleston, or Parkland, or Sandy Hook, or Pittsburgh, or Las Vegas, or so very many other places in the United States.
It’s true that some of the people who have become mass shooters have been diagnosed with a serious mental illness. But there are many reasons to reject the narrative of the mentally ill mass shooter. For one thing, it does not really fit the facts: the relationship between mental illness and mass shootings is murky at best. For another, it does a grave disservice to people who have a mental illness. As Devan Stahl has shown, associating mass shooting with mental illness stigmatizes people living with mental health conditions, who already face significant stigma.
Mental illness stigma is a complex phenomenon reflecting multiple beliefs. Research has shown that people tend to view those with mental illness as dangerous and unpredictable. Biological explanations of mental illness, in particular, can lead people to think that those with mental illness are fundamentally different from those who do not have such a diagnosis. Again, these beliefs are not supported by data. But they do provide people with the comforting sense that there is an explanation for mass shootings. Notably, it’s an “internal” explanation that focuses on the shooter himself, rather than on broadersocialandpolicy issues relevant to the phenomenon. And for some, that fact, too, is comforting.
How philosophy can help us think about mass shootings and mental illness
But, I think, there is another way of thinking about the link between mental illnesses and mass shootings that may actually be helpful. Rather than focusing on whether individual mass shooters (or the majority of mass shooters) are mentally ill, we can think about the similarity between mass shootings and (some) kinds of mental illness. The philosopher Ian Hacking has written about the phenomena of transient mental illness, by which he means: “an illness that appears at a time, in a place, and later fades away. It may spread from place to place and reappear from time to time. It may be selective for social class or gender, preferring poor women or rich men. I do not mean that it comes and goes in this or that patient, but that this type of madness exists only at certain times and places.”
Two aspects of his analysis may be useful here. First, he draws an analogy between these conditions and the concept of an ecological niche, which provides a place in which a species can thrive, whereas other places do not allow it to live at all.
Second, he emphasizes that categories of human beings are different from other categories: a tiger, for example, does not care whether we classify her as a tiger, whereas human beings often care deeply about how we are categorized. Because of this, categories of human beings are prone to what Hacking calls “looping effects.” He means that people and the categories into which they put them interact with and change each other. Once a category is “out there” in the world, people may come to identify with it and behave accordingly. During the 1980s, for example, mental health professionals began to see increasing numbers of people with multiple personality disorder, in part as a result of numerous books, televisions shows, and media stories that described this phenomenon. But groups of people also behave in ways that change the characteristics associated with a category. Over time, people who were diagnosed with multiple personality disorder began to exhibit more, and more differentiated, personalities.
Hacking’s analysis is useful even if we don’t think that “being a mass shooter” is a form of mental illness. (It’s also worth noting that even those who think that mass shootings are caused by mental illness don’t think that “being a mass shooter” is a kind of mental illness.) In fact, multiple personality disorder is not recognized as an illness by mental health professionals. Instead, what matters is that it was a recognizable way to behave, or, in Hacking’s words, to be a person – and also that it came into being in a particular kind of social context that, somehow, fostered this way of being a person.
Thinking about mass shootings in Hacking’s terms may help us to understand them. For one thing, mass shooters occupy a very specific niche: they exist almost uniquely in the United States during the past few decades. Appeals to mental illness as a cause can’t explain this fact. Moreover, mass shootings tend to follow a pattern – now that the category exists, members of the group tend to behave according to its rules. But (and this is the other half of the looping effect), we should also be alert to ways that the rules of the category may be changing over time. Recent mass shootings, for example, have been linked to white supremacy. It also seems to be becoming more common for mass shooters to leave a manifesto.
Perhaps most importantly, Hacking gives us a way to think about preventing mass shootings. Blaming mass shootings on mental illness implies that we can do nothing about them, especially if we view people who have a mental illness as essentially different from those who don’t have one. If men who become mass shooters do so in a very particular niche, then the way forward is to destroy the niche which lets them thrive.
Robyn Bluhm, PhD, is an Associate Professor with a joint appointment in the Department of Philosophy and Lyman Briggs College. She is a co-editor of The Bloomsbury Companion to Philosophy of Psychiatry.
Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, August 29, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.
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Center Assistant Professor Dr. Laura Cabrera and co-authors Dr. Robyn Bluhm and Rachel McKenzie have a new article available online in Neuroethics, “What we (Should) Talk about when we Talk about Deep Brain Stimulation and Personal Identity.” The article resulted from the team’s Science and Society at State funded project on “Psychiatric Interventions: Values and Public Attitudes.”
Abstract: A number of reports have suggested that patients who undergo deep brain stimulation (DBS) may experience changes to their personality or sense of self. These reports have attracted great philosophical interest. This paper surveys the philosophical literature on personal identity and DBS and draws on an emerging empirical literature on the experiences of patients who have undergone this therapy to argue that the existing philosophical discussion of DBS and personal identity frames the problem too narrowly. Much of the discussion by neuroethicists centers on the nature of the threat posed by DBS, asking whether it is best understood as a threat to personal identity, autonomy, agency, or authenticity, or as putting patients at risk of self-estrangement. Our aim in this paper is to use the empirical literature on patients’ experiences post-DBS to open up a broader range of questions – both philosophical and practical, and to suggest that attention to these questions will help to provide better support to patients, both before and after treatment.
The full text is available online via Springer Link (MSU Library or other institutional access may be required to view this article).
In November of 2018, a Chinese scientist announced that he had edited the embryos of twin girls and that the twins had been born. The scientist, He Jiankui, used CRISPR, a revolutionary method of editing sequences of genes, to delete the gene CCR5 from the embryos’ sequences. The intention was to make the twins resistant to HIV. Editing human embryos and allowing those embryos to develop into living, breathing babies was widely condemned. However, now it appears possible, likely even, that the twins’ cognition was impacted, perhaps improved. This, however, was an off-target effect—it was unintended. On March 13, Nature published a comment from a group of scientists calling for a moratorium on clinical uses of human germline editing. This call is only for a moratorium on clinical uses, not on research on editing the human germline.
Despite the moratorium, I think a good argument can be made that tolerating the clinical use of human germline editing is morally permissible. Here is one such argument. The fact that He Jiankui edited the girls’ embryos suggests that it is inevitable that some scientists are going to engage in this behavior. Imposing a moratorium is unlikely to change this—the cat’s out of the bag. Given that the behavior is inevitable, we should ensure it is performed as safely as possible in order to reduce the risk of harm.
Image description: an illustrated image of a strand of DNA with a piece being inserted, representing CRISPR-Cas9 technology. Image source: NIH Image Gallery/Flickr.
The Inevitability Argument
I’m claiming that because clinical use of human germline editing is now inevitable, we should tolerate and regulate it. Generally, arguments of this type don’t work. It isn’t generally true that just because something is going to happen anyway, we should not only tolerate that behavior, but also make sure that it is done safely. For example, it’s true that humans murdering other humans is inevitable (unless we can cognitively or morally enhance people through, for example, gene editing!). Despite prohibitions on murdering, it still happens and probably always will. But its inevitability doesn’t mean that we should tolerate it but ensure that it is done safely. We shouldn’t, obviously.
Sometimes the argument does work, though. Sometimes the inevitability of a behavior suggests that we should tolerate it under regulation. For example, people using IV drugs is, for the foreseeable future, inevitable. Given this inevitability, it is morally justifiable to tolerate the behavior and do what we can to ensure that it is done safely. One way we do this is through needle exchanges. More recently, similar arguments support the widespread availability of naloxone for overdoses. So, sometimes, but not generally, the inevitability of a behavior justifies the tolerance of the behavior in order to ensure it is performed safely.
Reducing Harm
Why does the Inevitability Argument work in the case of needle exchanges? Why does it fail in the case of murder? One difference is that we know murder is wrong. You can’t have the concept of murder without also having the concept of wrongness. To tolerate murder would be to tolerate something that is morally prohibited. But we should be more skeptical of the wrongness of IV drug use—it may not be wrong at all, to say nothing of policies that permit or prohibit it. Even if it is wrong, our confidence that it is so should be lower. Another difference is that in the case of needle exchanges with IV drug users, the tolerance and regulation is meant to reduce harm, not only to the users, but to society. On the face of it, it seems implausible that one could anticipate a parallel policy of tolerating and regulating murder to reduce harm. Rather, tolerating and regulating murder would increase harm.
Inevitability of Clinical Use of Human Germline Editing
Is the clinical use of human germline editing more like IV drug use, or more like murder? Supposing that whether the Inevitability Argument works depends on whether we know the behavior being tolerated is wrong, and whether tolerating it is intended to reduce harm, the clinical use of human germline editing seems much more similar to IV drug use than it does to murder. First, we don’t know whether the clinical use of human germline editing is wrong, unlike our knowledge that murder is wrong. Whether it is wrong or permissible or obligatory depends on a lot of factors, including on whether embryos have a moral status and whether we have a duty to future persons.
Second, what would tolerating the clinical use of human germline editing look like? It would require scientific and political oversight of methods, data, and follow-up clinical care. But more importantly, the tolerance and regulation of the clinical use of human germline editing would require that we know more about what the effects of it will be. The only way we can acquire this knowledge is by conducting research on the clinical consequences of editing the human germline. This is all to say that the intention of tolerating the clinical use of human germline editing is to reduce as much as possible any potential harms, both to the person whose embryo was edited as well as to society.
Tolerating and Regulating Clinical Use of Human Germline Editing
By these criteria, the clinical use of human germline editing looks much more like needle exchanges for IV drug use. If so, then the Inevitability Argument may work, suggesting that we should tolerate and regulate its practice. But this tolerance and regulation impose further requirements: we must closely monitor the behavior and support research on the effects of editing the human germline.
Scientists assert (without sufficient foundation, I think) that the behavior is wrong. Do we really know that the clinical use of editing the human germline is wrong? If so, what general principle grounds this knowledge? What are the consequences of this general principle for other lines of scientific research? Is the clinical use of human germline editing really inevitable?
Parker Crutchfield, PhD, is Associate Professor in the Program in Medical Ethics, Humanities, and Law at the Western Michigan University Homer Stryker M.D. School of Medicine, where he teaches medical ethics and provides ethics consultation. His research interests in bioethics include the epistemology of bioethics and the ethics of enhancement, gene editing, and research.
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What are the ethical implications of gene-editing human embryos? Do we risk stifling scientific advancement by banning such medical research?
Guests Dr. Leonard Fleck, Acting Director and Professor in the Center for Ethics and Humanities in the Life Sciences, and Dr. Marleen Eijkholt of Leiden University Medical Center in the Netherlands discuss the pros and cons, stemming from the recent news out of China of gene-edited babies. They share thoughts on the ethical implications of using such technology to alter human embryos, both now and in the future.
This episode was produced and edited by Liz McDaniel in the Center for Ethics. Music: “While We Walk (2004)” by Antony Raijekov via Free Music Archive, licensed under a Attribution-NonCommercial-ShareAlike License. Full episode transcript available.
About: No Easy Answers in Bioethics is a podcast series from the Center for Ethics and Humanities in the Life Sciences in the Michigan State University College of Human Medicine. Each month Center for Ethics faculty and their collaborators discuss their ongoing work and research across many areas of bioethics—clinical ethics, evidence-based medicine, health policy, medical education, neuroethics, shared decision-making, and more. Episodes are hosted by H-Net: Humanities and Social Sciences Online.
Whether by chipping away at the diseases of aging one-by-one, or by altering the fundamental biology of aging, medical research seems to be reaching for one over-arching goal: indefinitely extending the human lifespan. Living a longer, healthy life seems like an unqualified good. So long as life is good, who wouldn’t want to live as long as possible? The question turns out to be more complicated than it sounds. Dr. Tomlinson will be explaining some doubts, from both the individual and societal points of view.
Join us for Dr. Tomlinson’s lecture on Wednesday, February 13, 2019 from noon until 1 pm in person or online.
Tom Tomlinson was the Director of the Center for Ethics and Humanities in the Life Sciences from 2000-Fall 2018, has written and spoken on a wide variety of bioethical issues since 1981, and has provided clinical ethics consultation services for a number of hospitals in Michigan. He received his PhD in Philosophy from MSU in 1980, and is happy to have mentored students who have embarked on successful careers in bioethics. This talk marks the beginning of a possible book project tentatively titled The Lure of Immortality.
In person: This lecture will take place in C102 Patenge Room in East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.
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Robyn Bluhm, PhD
Center Assistant Professor 
Join us for Dr. Tomlinson’s lecture on Wednesday, February 13, 2019 from noon until 1 pm in person or online.
MSU Bioethics 