Antiseptic Rhetoric: Crisis Standards of Care

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This post is a part of our Bioethics in the News series

By Leonard M. Fleck, PhD

The COVID-19 pandemic has brought to public attention the phrase “crisis standards of care.” This is not a phrase that is especially meaningful to most members of the public. My concern, speaking as a medical ethicist, is that it is not intended to be especially meaningful for the broad public. Instead, it is what I would describe as a bit of “antiseptic rhetoric” intended to cleanse the public conscience of otherwise troubling ethical choices health professionals might be required to make during a pandemic.

Of course, antisepsis is generally good. It prevents potentially life-threatening infections. However, very aggressive antisepsis aimed at creating a hyper-sterile environment can result in an immune system that is “uneducated,” ill-prepared for a powerful pathogen that manages to elude our antiseptic efforts. My concern is that the use of antiseptic rhetoric around COVID-19, as with the phrase “crisis standards of care,” weakens the capacity of the public to understand and thoughtfully address the troubling and tragic ethics issues generated by COVID-19 in both the health care and political sectors of our social life.

Hospital bed illustration
Image description: A grey and white illustration of a single empty hospital bed sitting underneath a light that is shining down onto the bed. Image source: Izwar Muis/Pixabay.

The antiseptic meaning of “crisis standards of care” is that there are too many patients who need care all at once, and consequently, the normal expectations for timely and effective care will not be met. Delays will occur. As a patient, you might be parked in a hallway on a gurney for a few hours until a room becomes available. This is annoying, but hardly cause for an anxiety attack. However, this is very far removed from the reality that patients are facing in Idaho, Montana, Georgia, Florida, and several other states where the Delta variant of COVID-19 has overwhelmed the hospital system.

I was prompted to think about crisis standards of care by a recent article in the New York Times, “’I just cry all the time’: Non-Covid patients despair over delayed care.” The article tells the story of Mary O’Donnell, age 80, who needed a five-hour back surgery procedure that was postponed indefinitely due to the hospital being filled up. She was going to need multiple days in the hospital after surgery. Her concern was that she would be permanently impaired if the surgery were not performed very soon.

Of course, the person who would occupy the bed she needed would be a COVID-19 patient with a life-threatening condition. That person might survive, but maybe not. Mary O’Donnell did not have a life-threatening condition. She was “merely” at risk for losing the functioning of her legs. That is a terrible sentence to write, but it was the medical and ethical reality. This is rationing: painful, tragic, unfortunate, and sometimes unjust.

Here is another headline that better elucidates the meaning of crisis standards of care. “After 169 hospitals, a dad finally got the Covid-19 care he needed—and changed dozens of skeptics’ minds.” Robby Walker, age 52, needed ECMO (extracorporeal membrane oxygenation) to save his life—to serve as an artificial heart and lungs for him. That was in Florida. He ended up being transported by air to a hospital in Connecticut that had an ECMO bed. Readers should realize that this could hardly be the fate of hundreds of other COVID-19 patients needing ECMO. Reed Hickson, age 49 and the father of twelve in Texas, was unable to find an available ECMO bed in all of Texas. He died. That is what “crisis standards of care” means in practice.

Patients with advanced cancers or advanced heart disease needing surgical treatment will have those surgeries postponed with unknown consequences. Maybe a delay of those weeks will make no difference for that cancer; it will be effectively managed. Maybe the cancer has already metastasized, and the fate of that patient is sealed. Maybe the cancer will metastasize in those intervening weeks. Again, this is what “crisis standards of care” means in practice. It is health care rationing that necessarily implies problems of health care justice.

If there are not enough ICU beds or ventilators, then those scarce life-saving resources will go to patients who are judged most likely to survive. How is that judgment made? Can the public be confident it is made fairly? Is it ethically more important to save the most lives or the most life-years? This is a critical distinction.

Another phrase that has attracted some media attention pertains to a hospital invoking “universal do-not-resuscitate orders” for COVID-19 patients. Some right-wing media sites have warned COVID-19 patients that they must stay away from hospitals because hospitals have agreed not to treat COVID-19 patients but just let them die. No doubt those same sites are falsely pushing ivermectin as a treatment you can administer to yourself in the quiet of your own bedroom. What the phrase “universal do-not-resuscitate order” does mean is that if a COVID-19 patient codes in the ICU, there will be no effort to resuscitate them. The justification for a policy that would likely elicit anxiety, anger, and horror in much of the public is that such an effort would put at risk the lives of the health professionals attempting that effort. Further, the patient would most likely, not certainly, die despite that effort.

Here is a hard question: if you are a patient with a cancer or advanced heart disease needing surgery that has been postponed, how should you feel about that policy? You can survive, you want to survive, and you need that bed. Alternatively, if you are a COVID-19 patient in the ICU with a somewhat uncertain prognosis, how should you feel about that policy? These are the painful realities of crisis standards of care. This is health care rationing.

These are policies and policy choices that need public awareness, public understanding, and public legitimation. This requires hospitals and political leaders willing to take the risks associated with informing and engaging the public in discussion of the hard ethical choices that COVID-19 has thrust upon us. Antiseptic language may be innocuous (and politically desirable). However, the immune system of a democratic society, public reason, requires robust, honest, exacting language to strengthen its ability to resist infectious obfuscation and viral disingenuousness.

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Leonard M. Fleck, PhD, is Professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The authors will respond to all comments made by Wednesday, October 20, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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Continue reading “Antiseptic Rhetoric: Crisis Standards of Care”

Abortion Restrictions and Compulsory Organ Donation

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This post is a part of our Bioethics in the News series

By Parker Crutchfield, PhD, and Emily Carroll

The Texas legislature recently passed a law prohibiting abortion of a fetus older than six weeks. The law allows abortions after six weeks in life-threatening emergencies, but not when the pregnancy results from rape or incest. The law is extraordinarily restrictive and additionally deputizes citizens to enforce the law, providing a $10,000 bounty for successful civil suits of people involved in the “aiding and abetting” of abortion. The Supreme Court of the United States recently neglected to halt the law, which meant it went into effect.

We can’t be sure of the exact thoughts of those who enact or support the bill. However, there are some claims that such people often hold. In an article set to appear in Cambridge Quarterly of Healthcare Ethics, we argue that these claims imply that if one supports restrictions on abortion, one must also support compulsory organ donation. In other words, if you support restrictions on abortion, to remain intellectually consistent you must also support a corresponding degree of compulsory organ donation.

The Duty to Protect

Our argument starts with a claim common to those who oppose a woman’s right to choose to have an abortion. This claim is that a mother has a duty to protect her fetus.

The duty to protect is supposed to be a special obligation that holds between mother and fetus. Special obligations are those that hold between people in virtue of some relation between them. We have many obligations to other people; most apply regardless of how we are related to them. But special obligations arise only in the context of certain relationships, such as those that hold between parent and child. Most people agree that a mother or father’s obligations to their child are different from those that they have to strangers. Here’s one example: a parent has a duty to protect their child, but no such duty to protect a stranger who lives in a distant locale. There are other ways to explain the duty to protect, but the one we prefer is that special obligations kick in when one person’s life is vulnerable to another person’s actions (Goodin, 1986). The more one person’s well-being is vulnerable to another person’s actions, the more the second person must protect the first. Thus, on this view the mother has such a strong duty to protect the fetus that she must allow it to use her body, willing or not.

From Prohibited Abortion to Compulsory Organ Donation

But there are other implications of this line of argument. What’s true of the mother-fetus relationship is also true of the parent-child relationship. If a fetus has full moral status, then so does a child. And children are highly vulnerable to their parents. Their well-being is significantly affected by their parents’ actions. This is true not only of their social and emotional well-being, but also of their physical well-being. This is especially true of children who need organ or tissue donation.

Children who need blood products or a kidney, liver, heart, lung, or any other organ are highly vulnerable to their parents’ actions. At a minimum, the child is vulnerable to the parent’s cooperation with the healthcare team’s treatment plan. But the child who needs an organ or tissue donation is also vulnerable to the parent’s biology. In particular, a parent may be the most biologically compatible potential donor. For parents who are a compatible donor for their child, the child’s well-being is extremely vulnerable to their parent’s actions. In a society where organs and tissues are a scarce resource, the child’s vulnerability to a biologically compatible parent is a matter of life and death.

Children who need organ or tissue donation to survive are about as vulnerable to their biologically compatible parents as a fetus is to its mother. If a mother must donate her body to her fetus unless doing so emergently threatens her life, then a parent must donate organs and tissues unless doing so emergently threatens their life. This obligation would hold for both mothers and fathers. If a child needs a kidney and their father is a match, he must donate his kidney to his child, even if he doesn’t want to. Donating a kidney is not emergently life-threatening, nor is donating a variety of other organs and tissues. If mothers shouldn’t have a choice to terminate a fetus, parents should not have a choice about whether to donate organs and tissues.

A Policy Proposal

To be clear: we are not arguing that abortion is wrong or that it should be allowed. Nor are we arguing that tissue and organ donation should be compulsory. Rather, we are drawing out the implications of the anti-choice position. There are ways out of this implication, but they are unfriendly to the anti-choice position. For example, they may wish to accept that mothers have a duty to protect the fetus, but deny that they do so in virtue of the vulnerability of the fetus to the mother. Such a strategy is not likely to help their position, as other available accounts of special obligations are even less supportive (such as the view that special obligations only arise when someone voluntarily takes them on (Brake, 2010), which clearly isn’t the case when someone seeks an abortion).

For people who support the Texas law, intellectual consistency demands they also support compulsory organ donation. Thus, supporters should also consider legislation compelling parents to donate organs and tissues to their children, even if they don’t want to, and even if doing so presents a significant risk to the parent. Indeed, they should also want to deputize citizens to enforce the law, such that there is a $10,000 bounty on biologically compatible parents who fail to donate.

But if such a policy is unacceptable, so is the Texas law.

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Parker Crutchfield, PhD, is Associate Professor in the Department of Medical Ethics, Humanities, and Law at Western Michigan University Homer Stryker M.D. School of Medicine. His research interests include biomedical and public health ethics, moral psychology, and epistemology. His book, Moral Enhancement and the Public Good, was released by Routledge in 2021.

Emily Carroll is a third-year medical student at Western Michigan University Homer Stryker M.D. School of Medicine. She completed her undergraduate studies in psychology and biology at McGill University. Her research interests in medical school include bioethics and public health.

Join the discussion! Your comments and responses to this commentary are welcomed. The authors will respond to all comments made by Thursday, October 7, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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Continue reading “Abortion Restrictions and Compulsory Organ Donation”

Don’t Scapegoat Immigrants for the COVID-19 Pandemic Surge

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This post is a part of our Bioethics in the News series

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 unrealistic, unhealthy negative stereotypes

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 photo
Sean A. Valles photo

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.

You must provide your name and email address to leave a comment. Your email address will not be made public.

Continue reading “Don’t Scapegoat Immigrants for the COVID-19 Pandemic Surge”

Dr. Kelly-Blake presents at Michigan nutrition and dietetics conference

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Center Assistant Director and Associate Professor Karen Kelly-Blake, PhD, recently presented at the Michigan Academy of Nutrition and Dietetics 2021 Virtual Spring Conference. Dr. Kelly-Blake presented on “Dietitian and Client Base Mismatch: Are There Ethical Implications?”

In this information age, the ways patients gather information about their health and how they process this information to make decisions, within the constraints of their particular social context, is of utmost importance. Dr. Kelly-Blake explained the value and ethical aspects of shared decision-making to enhance nutrition adherence goals, help practitioners understand the constraints of the dietitian and client dyad mismatch, and address this mismatch with the goal of advancing professional practice.

Pandemic and Endemic COVID-19 Ethics: Lessons from the history of tuberculosis

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This post is a part of our Bioethics in the News series

By Karen M. Meagher, PhD

Recent U.S. headlines are starting to reflect a dawning public awareness that health experts have long suspected: COVID-19 might be with us for a long time. In January 2021, almost 90% of coronavirus expert respondents to a poll by Nature considered it “likely” or “very likely” that the virus will continue to circulate somewhere on the globe for years to come. As vaccine rollout continues, the crisis in India has yet again revealed the devastating consequences of pandemic mismanagement. Only two infectious diseases have been successfully eradicated globally: smallpox, and the lesser-known rinderpest. A world in which COVID-19 is endemic might be one that requires long-term public health planning and requires bioethics to recalibrate. The global health and social impact of the pandemic makes COVID-19 challenging to compare to other infectious diseases. However, ongoing multidisciplinary analysis of tuberculosis (TB) provides one demonstration of the possible contributions of bioethics looking forward.

Pandemics as social levelers

A bacterial as opposed to viral infection, TB outbreaks peaked in different places across the world throughout the 1700s and 1800s (Barnes, 2020). During such periods, TB affected people across social strata. Affluent instances of TB contributed to the emergence of social narratives romanticizing TB as a condition striking those with a more sensitive and artistic temperament (Bynum, 2012). Prior to the emergence of germ theory, TB was considered a hereditary condition, running in families with such temperamental proclivities. The notoriety of some TB patients bears resemblance to early celebrity cases of COVID-19 that circulated on social media, normalizing infection while illustrating both recovery and vulnerability. The social and cultural variability of such notoriety is also significant, with India’s highly publicized celebrity suicides during lockdown requiring more analysis to tease apart the mental health impact of COVID-19. Meanwhile, the death of well-known human rights advocates, such as actor Vira Sathidar, from COVID-19 has prompted reflection on the pandemic’s cost to India’s creativity in addition to the devastating loss of life.

Outdoor Play and Tuberculosis print from 1922
Image description: Print from 1922 shows a girl sitting by a window watching children playing outdoors. The title reads “Outdoor Play and Tuberculosis,” with the text: “Outdoor play is as necessary to health as food or sleep. At home, let the children play in the yard or on a well-guarded roof. At school, ample open air playgrounds must be provided. The city that fails to provide public playgrounds may be forced to provide tuberculosis sanatoria.” Image source: public domain/GetArchive.

Hopes for eradication

In the early 1900s, incidence of TB declined as living and nutrition conditions improved, and as populations acquired natural immunity. Some of these improvements were prompted by critiques of industrialization, which contributed to crowded and inhumane living and working conditions (Barnes, 2020).And yet, the same romantic narratives that normalized TB in the affluent also reflected and fostered social indifference to—and scapegoating of—the poor living with TB (Bynum, 2012). The development of effective antibiotic treatment and a childhood vaccine accelerated population health gains in the 1940s and 1970s respectively. The relative influence of economic, political, and biomedical casual factors in driving the decline of TB continues to generate debate across epidemiology and social sciences. Public health gains during this century shaped hopes for global TB eradication.

Rising inequality

However, the 1990s marked a time of increased recognition of resurgent TB across all nations. As with the recent COVID-19 surge in India, a social model of health is needed to account for resurgence of TB. 20th century rates were simultaneously influenced by global policy failure to address health needs of those in poverty, cultural and political events, and new pathogen variants. The rise of HIV and AIDS produced a distinct yet overlapping pandemic, as the immunocompromised are especially vulnerable to TB co-infection. Multidrug resistant tuberculosis (MDR-TB) had been developing alongside use of antibiotics. Medical anthropologist and physician Paul Farmer has been widely critical of global economic policy, which influenced bifurcated standards of care in affluent Western nations and the global south and to the rise of MDR-TB. The moral valence of communities worth investing in is also intertwined with histories of colonialism and ongoing racial and class dynamics that we have seen recapitulated during COVID-19 within the U.S. and globally.

Resistance and its social meaning

Antimicrobial resistance raises a distinct set of ethical issues, from obligations of antimicrobial stewardship to imperatives for drug and diagnostic tool development. The potential for development of COVID-19 vaccine resistance is an ongoing concern. Some fear that SARS-CoV-2 variants have mutations that render them uninhibited by (resistant to) neutralizing antibodies, thereby creating the possibility of “escaping” the immune system response seen in the already infected and/or vaccinated. The development of immune escape is a crucial factor in determining whether COVID-19 becomes endemic. The social implications of pathogen genomics are multifaceted:

  1. First, identification of new variants is now viewed by media organizations as newsworthy, influencing public perception of how outbreaks occur. The history of TB demonstrates that public interest could wane if media organizations in affluent nations lose interest in their novelty.
  2. Second, genomic surveillance illustrates one of the most promising areas of precision public health, requiring ethical guidance for establishing trust, transparency, and community welfare. However, the history of TB demonstrates the continuing global disparities in global health surveillance laboratory capacity.
  3. Third, Emily Martin’s ethnographic work on American understandings of immunity demonstrates the interplay between depictions of the body and pathogens, expert and lay experiences of disease, and social ideals (Martin, 1994). COVID-19 has undoubtedly altered human views of their relationship to microbes and will continue to do so in unanticipated ways.

Economics & TB

Currently, almost one quarter of the world’s population lives infected with tuberculosis. Many have a latent TB infection, which is not contagious. However, if untreated, latent TB can develop into active TB. The World Health Organization estimates that 10 million people fell ill and 1.4 million people died from TB in 2019. India leads the world in TB cases, an often-noted harbinger of its potential role in COVID-19 global health outcomes. The social determinants of health continue to need greater policy attention: 49% of people with TB continue to face catastrophic costs, defined as greater than 20% of annual household income. Drug resistance exacerbates these economic barriers: around 80% of people with MDR-TB face catastrophic costs. The economics of COVID-19 echo these relationships. As I write, members of the World Trade Organization are negotiating details of waiving COVID-19 vaccine intellectual property rights.

Endemics and social justice

The newly renamed MSU Center for Bioethics and Social Justice is an apt reflection of the shifting role of bioethics, including its attention to matters of population health. Emeritus faculty member Judith Andre notably argued bioethics is best understood as a multidisciplinary practice (Andre 2002). Bioethics practices must change in response to persistent and rising health inequities, including in infectious disease. TB outbreaks have affected community health for millennia, impacting residents of ancient Egypt and Greece. It is Ancient Greek, too, that provides the etymological differentiation between pandemic and endemic infections: pan, meaning “all,” en meaning “in,” and demos meaning “people.” We can sustain hope that COVID-19 will fade into the background, becoming another one of many common childhood coronavirus illnesses that does not confer serious symptoms. However, as this brief glimpse of the ethics and history of TB illustrates, COVID-19 merits distinct ethical analysis to avoid complacency.

Join the conversation

Global eradication of COVID-19 through universal vaccination requires a collective effort on a scale rarely achieved in human history. How do you think bioethics can generate new collaborations to sustain the global response to COVID-19? What values are relevant to you if COVID-19 becomes in the people as well as affecting all of us in this global emergency?

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Karen M. Meagher, PhD, is an Assistant Professor of Biomedical Ethics Research at Mayo Clinic. Her main research interest is in ethics and social implications of human and pathogen genomics. She also holds the position of associate director of public engagement in which she leads a community engagement network for the Mayo Clinic Biobank in the Center for Individualized Medicine.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, May 27, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.
Continue reading “Pandemic and Endemic COVID-19 Ethics: Lessons from the history of tuberculosis”

Listen: Social Justice-Oriented Bioethics

No Easy Answers in Bioethics Episode 25

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This month the Center was proud to officially announce its new name: Center for Bioethics and Social Justice. This name change reflects an updated mission with a focus on social justice-oriented bioethics. This episode features a conversation between Director Sean Valles, PhD, and Assistant Director Karen Kelly-Blake, PhD. Together they discuss moving forward in the bioethics space, what engaging in service to the people means to them, and the important work to be done to a create a healthier and more socially just world. They also explore questions related to the practical application of bioethics, and the challenge of preparing medical students for clinical practice in an inequitable world.

Ways to Listen

This episode was produced and edited by Liz McDaniel in the Center for Bioethics and Social Justice. 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 Bioethics and Social Justice in the Michigan State University College of Human Medicine. Center faculty and their collaborators discuss their ongoing work and research across many areas of bioethics. Episodes are hosted by H-Net: Humanities and Social Sciences Online.

Center for Bioethics and Social Justice: new name, mission, and leadership

Green Spartan helmet with text: Center for Bioethics and Social Justice, College of Human Medicine, Michigan State University

The MSU Center for Ethics and Humanities in the Life Sciences is proud to announce its new name: Center for Bioethics and Social Justice. This name change as of April 1 reflects an updated mission with a focus on social justice-oriented bioethics. The Center has a vision of a health system that is compassionate, respectful, and responsive to people’s needs, so that equity, inclusion, and social justice are available to all.

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Director Sean A. Valles, PhD

“Without an orientation, bioethics has no built-in real-world goals; it is merely a field of study. Doing social justice-oriented bioethics means we have a goal—advancing social justice in the real world with meaningful applications—as the north star for our journey as an institution,” said Center Director Sean A. Valles, PhD.

The updated name and mission follow the appointment of Valles as director earlier this year, along with the promotion of Karen Kelly-Blake, PhD, to assistant director.

“One key piece of the new name and mission is a rethinking and a recommitting of our identity,” said Valles. “The Center aims to be a hub for collaborations and conversations around the relationship between social justice and health. To do that, we will actively seek to engage with our college and university colleagues, local communities, and organizations in order to learn their concerns about the ways our society makes it hard to live a healthy life, and to begin trying to help.”

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Assistant Director Karen Kelly-Blake, PhD

The Center’s mission is to educate health professionals with skills, knowledge, and attitudes necessary to contribute to a world in which health practices are equitable, inclusive, and bolstered by conditions of social justice; to research the nature of bioethics and enhance its applications to the pursuit of equitable, inclusive, and just healthy societies; and to engage researchers, clinicians, policymakers, and communities around shared interests in the attainment of a healthier and more just world.

“Building bridges among MSU experts and outward to communities is of value to everyone involved,” added Valles.

The Center began in 1977 with the formation of the Medical Humanities Program. In 1988, the program became the Center for Ethics and Humanities in the Life Sciences. Faculty in the Center are committed to teaching medical students in the College of Human Medicine and developing social context of clinical decisions content for the Shared Discovery Curriculum. Center faculty are also committed to research, scholarship, and public outreach and education—all working toward the goal of creating a more just world.

Visit the Center’s website to learn more about its faculty and outreach activities, such as public seminars, podcast episodes, and monthly blog posts that explore timely bioethics topics.

Related: Announcing Center Director Sean A. Valles and Assistant Director Karen Kelly-Blake

Bioethics for Breakfast: Caring with and for undocumented physicians and patients

Bioethics for Breakfast Seminars in Medicine, Law and Society

Mark G. Kuczewski, PhD, of the Loyola University Chicago Stritch School of Medicine presented at the April 22 Bioethics for Breakfast session, offering perspectives and insight on the topic “Caring with and for undocumented physicians and patients.” Bioethics for Breakfast is generously sponsored by Hall, Render, Killian, Heath & Lyman.

The session addressed the contributions of undocumented immigrants to our communities in the United States, including those of DACA (Deferred Action for Childhood Arrivals) physicians, to our healthcare system; the limits that exclusionary practices place on the contributions of undocumented immigrants to our healthcare system; and approaches to facilitating better care of undocumented immigrants in the healthcare system.

Dr. Kuczewski shared facts about undocumented immigrants in the U.S.: they number approximately 10-12 million, approximately two-thirds have lived in the U.S. for more than 10 years, they cannot buy a full-priced policy on an ACA exchange, they commit crimes at lower rates than U.S. citizens, an increasing percentage are of Asian origin, and there are fewer in the U.S. now than in 2010. He pointed out that excluding these individuals from obtaining health insurance through the Affordable Care Act ends up harming the overall pool of people in the insurance marketplace.

Dr. Kuczewski also explained how U.S. immigration policies have changed since the Clinton administration and now those policies have created barriers to entering the U.S. lawfully and with authorization, with regard to application rules and the quota system.

“This is a people issue,” said Dr. Kuczewski, adding that the stable population of 10-12 million undocumented immigrants in the U.S. have healthcare needs, and need to be able to seek care. Using the example of someone in need of kidney dialysis, he pointed out that the usual route of getting Medicare coverage is not an option because federal benefits are not available to undocumented immigrants. Dr. Kuczewski highlighted the importance of hospitals and clinics caring for undocumented patients and advocating for them, in order to foster trust over fear, and in turn help to avoid negative impacts on public health.

Finally, Dr. Kuczewski discussed the challenges for DACA recipients who matriculate through medical school while being ineligible for federal student loans. The discussion portion of the session explored the importance of educating people, including politicians, on revisions to the ACA, and avenues for advocacy work for schools and universities, students, medical professionals, and instructors. Related resources are linked below.

Related Resources

About the Speaker

Mark G. Kuczewski, PhD
Mark G. Kuczewski, PhD, is the Fr. Michael I. English, S.J., Professor of Medical Ethics and the director of the Neiswanger Institute for Bioethics at the Loyola University Chicago Stritch School of Medicine. Mark is a past president of the American Society for Bioethics and Humanities (ASBH) and a Fellow of the Hastings Center. He has been engaged in bedside clinical ethics issues for more than 25 years. For the last decade, he has been an articulate spokesperson for the just and equitable treatment of immigrant patients. He created the Sanctuary Doctor website with Drs. Johana Mejias-Beck and Amy Blair to assist clinicians in supporting immigrant patients. He led the effort to make the Stritch School of Medicine the first medical school in the nation to openly welcome applicants who are DACA recipients.

About Bioethics for Breakfast:
In 2010, Hall, Render, Killian, Heath & Lyman invited the Center for Bioethics and Social Justice to partner on a bioethics seminar series. The Center and Hall Render invite guests from the health professions, religious and community organizations, political circles, and the academy to engage in lively discussions of topics spanning the worlds of bioethics, health law, business, and policy. For each event, the Center selects from a wide range of controversial issues and provides two presenters either from our own faculty or invited guests, who offer distinctive, and sometimes clashing, perspectives. Those brief presentations are followed by a moderated open discussion.

If Whole Genome Sequencing is So Cheap and Quick, Why Shouldn’t Everyone Have It Done?

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This post is a part of our Bioethics in the News series

By Leonard M. Fleck, PhD

The headline in New York Times Magazine reads: “Scientists can now sequence an entire genome overnight.” This is amazing. It took ten years and $3 billion to do the first mapping of the human genome, all three billion base pairs. Today the entire genome of any individual can be mapped for less than $1000. Why is that important? There are preventative, diagnostic, therapeutic, reproductive, and public health reasons. The public health reasons are most evident with the speed with which all the variants of COVID-19 have been mapped.

Having one’s genome mapped can provide an individual with some foreknowledge of health risks to which they might be vulnerable (always keeping in mind environmental factors linked to inherent genetic risks, also keeping in mind the uncertainty and probabilities associated with the vast majority of health risks identified in this way). The risks of medical harm related to genetic ignorance can be reduced. A family of genes referred to as P450 determine whether we are normal, fast, or slow metabolizers of drugs. If we are fast metabolizers, a normal dose will be metabolized too quickly with diminished effectiveness. If we are slow metabolizers, a normal dose will accumulate to potentially life-threatening levels in some cases. Roughly 7% of 1200 FDA approved medications are affected by actionable germline inherited pharmacogenes. Even more importantly, 18% of outpatient U.S. prescriptions (more than four billion per year) are affected by actionable germline pharmacogenomics.

Whole Genome Sequencing (WGS) can assist future possible parents to determine the best reproductive option if they know they represent specific genetic risks to future possible children, e.g., if each were a carrier for a mutated cystic fibrosis gene. In addition, WGS can be used to make accurate diagnoses of very rare disorders that would otherwise require harmful, invasive, diagnostic odysseys. This will be very important in the context of infants in the NICU or children in the PICU.

A technician who has long dark hair and is wearing safety glasses, a white coat, and purple gloves, loads DNA samples into a desktop genomic sequencing machine
Image description:  A technician loads DNA samples into a desktop genomic sequencing machine at the Cancer Genomics Research Laboratory, part of the National Cancer Institute’s Division of Cancer Epidemiology and Genetics (DCEG). Image source: Daniel Sone/National Cancer Institute/Unsplash.

I remind students that unlike normal medical tests that only yield information about the person who has the test, genetic tests tell us about genetic features of a range of close relatives. Hence, if a genetic test identifies a serious health vulnerability in me, that information can be used to alert other family members of that same vulnerability of which they might otherwise have been ignorant (and which might well be medically manageable before clinical symptoms emerge that might then suggest an irreversible disease process). The therapeutic potential of WGS is most evident today in the case of metastatic cancer. WGS can provide base-pair resolution of an entire tumor genome in a single run, thereby revealing the unique mutations and genomic alterations in the cancer tissue. This will often allow the identification of a targeted cancer therapy, such as imatinib, that targets the distinctive genetic features of a cancer, such as chronic myelogenous leukemia.

In the reproductive context WGS can be used as a non-invasive prenatal screening tool to offer a comprehensive assessment of the fetus. Likewise, WGS could be used at birth as a screening tool to offer a more comprehensive assessment of the infant than the current gene panel, which is only looking for fifty-six rare genetic disorders. This increases the opportunities for timely therapeutic interventions, when available.

Given all these potential therapeutic benefits, what would be the potential ethical challenges? Cost is an issue that raises health care justice problems. Though the sequencing itself costs less than $1000, the analysis, interpretation and counseling bring the cost to $3000 (though in the case of cancer treatment the cost will be $10,000). Few health insurers cover these costs. Should access to WGS then be publicly funded, as a matter of health care justice, perhaps as part of a basic benefit package guaranteed to all? If all 330 million Americans wanted WGS, the cost would be $990 billion. Would that be either a wise or just use of limited health care resources, given all sorts of other unmet health care needs in our society?

One of the main rationales for doing WGS is preventive, i.e., to identify significant health vulnerabilities whose risk of actualization can be reduced by behavioral change. However, the critical question is whether we can be very confident that most patients would commit to the required behavioral changes. Available medical evidence suggests pessimism in this regard, which would imply that WGS with this expectation represented a poor use of social resources. No one believes McDonald’s business plans are threatened by WGS.

If WGS is used to replace current neonatal screening practices, are the privacy rights of newborns put at risk, given later in life genetic vulnerabilities that would be revealed? Would these concerns be mitigated if only medically actionable information were revealed to parents, all other information being set aside until that child reached adulthood? However, what exactly is the scope of “medical actionability?” That child might be vulnerable to some serious genetic disorders much later in life. This would not be a concern for the child as a child. But that child might have older relatives for whom this information would have considerable potential relevance. What are the ethical issues associated with either revealing or failing to reveal that information to potentially “at-risk” relatives?

A very important feature of genetic information gleaned from neonatal WGS (and all WGS for that matter) is that the vast majority of that information will be either of unknown or highly uncertain significance. This will be especially true because of the thousands of mutations that would be part of anyone’s DNA. For parents of a newborn, such uncertainty could be distressing for years and years. However, there is also the uncertainty associated with the responsibilities of primary care physicians in this regard. Who is supposed to have responsibility for tracking changes in genetic knowledge regarding those genetic variations in an individual as medical research advances? And who would be responsible for conveying this new information to parents or adult children, and judging what should be told and when? This is a very complex medical information management problem, relative to which current physician complaints regarding the electronic medical record would fade into insignificance.

Let us assume that WGS is going to be done more thoughtfully and more parsimoniously, such as a diagnostic or therapeutic context where such information would be most useful. What will still happen is the discovery of all sorts of incidental genetic information, sometimes with frightening potential consequences. Imagine this bit of medical dialogue: “Mr. Smith, we were looking for the genetic roots of your heart disease (which we found), but we also discovered your genetic vulnerability to an early-onset form of dementia.” Many patients would not want to know this. How is a physician supposed to know what a patient does or does not want to know in this regard?

Finally, WGS could generate new problems of health care justice. Imagine that the incidental finding in the prior paragraph was a 10% lifetime risk of some serious but treatable cancer. I personally would not be especially distressed by such a finding. However, other individuals might be especially anxious and demand all manner of expensive diagnostic tests on a semi-annual basis to rule out any indications of disease initiation. Would that individual have a just claim to such resources at social expense?

To return to the title of this essay, perhaps the fact that WGS is quick, easy to do, and relatively inexpensive is insufficient reason to justify the promiscuous promulgation at social expense of this technology. Perhaps more thoughtful social and professional deliberation regarding the issues identified in this essay would yield less ethically fraught uses of WGS. Then again there could be the 2030 version of the electronic medical record with room for terabytes of genetic information and thousands of new tabs and subtabs!

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Leonard M. Fleck, PhD, is Professor in the Center for Bioethics and Social Justice and the Department of Philosophy at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, May 6, 2021. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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More Bioethics in the News from Dr. Fleck: Religious Coercion of Physicians: Whose Conscience Is It Anyway? Health Care and Social Justice: Just Take Two Aspirin for Your Tumor If You Cannot Afford Your Cancer Care; Medicare For All: This Is Going to HurtGreed Is God: The Divine Right to Avaricious Drug PricingGene Editing: God’s Will or God’s Won’t

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Listen: Insight into the Telehealth Landscape

No Easy Answers in Bioethics Episode 24

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In this episode, Senior Academic Specialist Libby Bogdan-Lovis is joined by Dr. Sarah Pletcher, Vice President and Executive Medical Director of Virtual Care at Houston Methodist. Dr. Pletcher shares her telehealth expertise in a conversation that explores the benefits of telehealth for patients and providers, the influence of the COVID-19 pandemic on telehealth adoption, reimbursement models, the future of telehealth, and more.

Ways to Listen

This episode was produced and edited by Liz McDaniel in the Center for Bioethics and Social Justice. 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 Bioethics and Social Justice in the Michigan State University College of Human Medicine. Center faculty and their collaborators discuss their ongoing work and research across many areas of bioethics. Episodes are hosted by H-Net: Humanities and Social Sciences Online.