The White House outbreak: How to criticize irresponsible leaders without getting stuck in the illness blame game

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

By Sean A. Valles, PhD

In a twist of fate, there was an outbreak of COVID-19 at a White House celebration of the nomination of Amy Coney Barrett for the Supreme Court of the United States. This elicited a wide range of reactions to seeing a gathering of opponents of strict COVID-19 control measures being hurt by the very pandemic they have downplayed. While others have worried about the moral philosophy of taking pleasure in others’ suffering, or the hypocrisy of evading rules one publicly espouses, I have a different worry. A poll shortly after the White House outbreak found that a majority of respondents believed that Trump had acted “irresponsibly” in how he had handled his personal risk of infection from people he interacted with. While I do not worry about the president being blamed for his illness, I do worry about the wider cultural practices of 1) victim-blaming by attributing a person’s illness to their personal moral failure, and 2) insisting that health is a matter of individual choice. While the distinction might not seem important at first, I will argue there is an important difference between victim-blaming the ill and holding leaders accountable for setting bad examples with their conduct and other leadership failures. The first kind of blame is toxic in a society, and the second kind of blame is an important part of a well-functioning democracy.

President Donald Trump in the Oval Office nominating Amy Coney Barrett to the Supreme Court
Image description: President Donald J. Trump and First Lady Melania Trump pose for a photo with Judge Amy Coney Barrett, the President’s nominee for Associate Justice of the Supreme Court of the United States, her husband Jesse and their children on Saturday, Sept. 26, 2020, in the Oval Office of the White House. Image source: Official White House Photo by Andrea Hanks.

Blaming people for their ill health is a strategy with an awful track record. It doesn’t do any good for the people subjected to “you’re too fat” messages. It doesn’t do any good for survivors of sexual assault or domestic violence. When directed inward, we self-blame for failing to do enough de-stressing self-care, rather than directing our blame to more appropriate targets like the needlessly bad working conditions or economic insecurities that make us stressed in the first place. Repeated messages that “sickness is the result of individual moral failure” also reinforce stigma. Stigma is a nasty phenomenon, with a “corrosive impact on the health of populations” and is particularly bad in cases of infectious diseases like COVID-19 because it actively encourages people to hide their infection, which is obviously bad for them and for others who interact with them.

A second problem with blaming people for their ill health is that ethics of blaming individual behavior reflects a misunderstanding of how health behavior works in the first place. Seemingly individualistic choices like diet, condom use, smoking, alcohol consumption, etc. are not made independently. We choose such things in roughly the same way we “choose” our religions or the languages we speak at home. Yes, each of us can choose to practice an entirely different religion (or lack thereof), and each of us can learn and use a different language in the home. Some of us do. In all of these cases, though, the vast majority of us don’t venture too far from a combination of what we learned while growing up and the cues we get from the people we interact with. We eat the foods familiar, convenient, and affordable to us. We adopt the values and beliefs (including trust in aspects of the scientific endeavor) of our communities, etc. Individual choices exist, but they exist within larger social contexts that have powerful but subtle effects on our choices.

Each of our everyday behaviors related to COVID-19 exist in a complex ecosystem of influences. Mask wearing and other social distancing measures have become intensely politicized and tied to masculinity. Masks and other health behavior measures also create new inconveniences and financial expenses. Social pressures also vary vastly from one setting to the next—in one store there are prodding questions and judgmental stares for wearing a mask, at an adjacent store there are similar pressures on those who don’t wear a mask. How we move our bodies and (un)cover our faces within these intense social pressures is not simply an individual choice.

Take the case of one of the attendees of the party at the White House, University of Notre Dame President, the Rev. John I. Jenkins. He did not wear a mask at the indoor/outdoor party, shook hands with attendees, and otherwise did not follow the standards he had imposed on members of his own university. He knew better and did not do better. Many of us have likely also gone against our better judgment to fit the incautious social distancing norms of a setting. Whether it is the university president or the university student, this is indeed hypocritical, and irresponsible in a sense. But, such blame is aside from the point, and more importantly it contributes to the sort of harmful cultural practices mentioned earlier—especially victim-blaming and stigmatizing the ill. Pointing out hypocrisy and the assigning of blame for individual health behavior distracts from the far more damaging thing Jenkins and the other leaders at the White House party did. As cultural leaders, they undercut efforts to build new norms, like public mask-wearing, the habit of greeting people without needlessly touching hands, etc.

We ought to blame Trump, Jenkins, and many other leaders who attended that party. We ought to blame them for failing in their relationships to the people they lead. That is a devastating form of irresponsibility. And it is very important to separate that kind of blame and irresponsibility accusation from the destructive form of blame discussed above: blaming people for having irresponsible relationships with their bodies/health.

The “personal responsibility” blame game has been the go-to talking point of conservative governors as they use their power to obstruct or dismantle public health measures. “You shouldn’t have to order somebody to do what is just in your own best interest and that of your family, friends and neighbors,” according to Alabama Governor Kay Ivey. Scolding people about “personal responsibility” during a public health crisis is a strategy based on how one wishes the world worked and not how it is actually working. Along similar lines, abstinence-only sex education doesn’t work (“teenagers: be sexually responsible by just not having sex before marriage!”), and neither does “just say no to drugs” education. Jenkins was at least right to point out that his behavior was a failure of leadership. As many of my colleagues in population health science say, we need to build a “culture of health.” That will require leaders suited to the task, and we ought to blame them when they fail in that leadership. Just skip the personal health blaming.

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Sean A. Valles, PhD, is an Associate Professor with an appointment in the Michigan State University Lyman Briggs College and the Department of Philosophy (where he is also Associate Chair). His research spans a range of topics in the philosophy of population health, from the use of evidence in medical genetics to the roles played by race concepts in epidemiology. He is author of the 2018 book Philosophy of Population Health: Philosophy for a New Public Health Era. He is also co-editor (with Quill R. Kukla) of the Oxford University Press book series “Bioethics for Social Justice.”

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, November 5, 2020. 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.

More Bioethics in the News from Dr. Valles: We Need Healthier Schools, and Student Activists Are Stepping Up; Recognizing Menstrual Supplies as Basic Health Necessities: The Bioethics of #FreePeriodsTrump’s Attempt to Reignite the Coal Industry Is Another Health Policy BlunderPolitics and the Other Lead Poisoning: The Public Health Ethics of Gun ViolenceClimate Change and Medical Risk

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“There’s no proof that anything works!” The ethics of COVID-19 research

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By Robyn Bluhm, PhD

The New York Times Magazine recently published a long-form story about the tension between treating patients with COVID-19 by any means that might improve their chances of survival and recovery, and enrolling them in clinical trials to establish the safety and efficacy of these treatments, thus improving care both for future patients and for those who survived the trial. As with many stories about health care in the current pandemic, this article both raises perennial issues in bioethics and shows them in their starkest form: the seriousness of the condition of these patients and the lack of knowledge about how best to help them mean that the ethical dilemma described in the story is particularly clear. But a closer look at work in bioethics and the epistemology of clinical research suggests that, while the dilemma is clear, there are more ways forward than the two incompatible ways portrayed in the story.

The story begins by describing the clash between a critical-care physician faced with a COVID-19 patient whose condition was worsening, and a researcher who had enrolled that patient in a clinical trial. The former wanted to give the patient a higher-than-standard dose of the anticoagulant she was being treated with, even though this might mean that she would need to be withdrawn from the trial. The latter advocated for the importance of maintaining the integrity of the study, saying that acting on instinct instead of on evidence “was essentially ‘witchcraft’.”

Unsurprisingly, this characterization did not go over well with the other doctors in the meeting. A less contentious way of describing the situation might have been to say that, while doctors use their clinical judgment to make decisions about how best to use available evidence in caring for a particular patient, this only works when there is evidence available. And everyone agrees that, in the case of COVID-19, there is horrifyingly little evidence. This means that enrolling COVID-19 patients in clinical trials is not depriving them of standard care (care that such patients would ordinarily receive if not in the trial)–standard care for this condition does not yet exist.

Nurse with medical equipment illustrated image
Image description: An illustration of a health care worker wearing blue scrubs, head covering, and face covering. Surrounding them are a stethoscope, face mask, syringe and surgical tools, thermometer, and microscope. The background is light pink. Image source: sunshine-91/Vecteezy.

There is a lot to think about here. Importantly, it’s not the case that the doctors treating seriously ill patients had no idea what to do. They had a wealth of experience treating patients with severe viral infections, with acute respiratory distress syndrome, with cardiac arrest, or with pathological immune reactions (the “cytokine storm” sometimes seen in chemotherapy patients). Some of this knowledge informed the care of early COVID-19 patients, raising the question of which treatments could be successfully generalized to this new patient group.

The notion of generalizable knowledge is in fact central to research ethics. The Belmont Report, which guides research ethics oversight in the United States, draws a bright line between research and clinical practice on the basis of their ostensibly distinct goals. Research aims to provide generalizable knowledge, while clinical practice aims to benefit an individual patient. This way of drawing the distinction meant that when physicians depart from standardly-accepted care in the treatment of an individual patient, it does not count as research (and therefore does not require ethics review). It also leads to the problem described above: enrolling a patient in a research study requires that they forgo their right to individualized care and are treated according to study protocol. Deviations from the protocol, such as the one described in the opening of the New York Times story, are prohibited. Patients whose care does not follow the protocol will usually be withdrawn from the study.

But this sharp distinction between research and practice also makes assumptions about the kind of clinical research being conducted. Schwartz and Lellouch (1967) distinguish between “explanatory” and “pragmatic” approaches to clinical trials. Explanatory trials are designed to minimize the influence of any factors, other than the experimental therapy, that could affect the outcome being measured. These other factors include additional medications and the presence of comorbid disease. Pragmatic trials, by context, are designed to resemble actual clinical practice, where patients often take more than one medication and often have more than one health problem. Pragmatic trials may also enroll a wider variety of participants (especially older participants), permit alterations in the study protocol, be more flexible in the timing of outcome measurement; in general, they are more flexible in their design and analysis. A given trial will fall somewhere on the spectrum between “highly explanatory” and “highly pragmatic” in its design.

In the case of COVID-19, there are good reasons to favor trials that are more pragmatic. First, there are so many factors that might affect prognosis (or were previously thought to do so) – age, gender, weight, blood type, various pre-existing conditions – that the study population cannot be narrowly defined. If it is, then the results of the study will apply only to people in that narrow population. Second, care for critically ill patients is rapidly developing. Even in the absence of an established drug regimen, survival rates have been improving. This means that by the time a trial is completed, the experimental therapy will be implemented in a very different context of care. Perhaps more importantly, because of these first two reasons, a strict, explanatory trial is less likely to give generalizable knowledge than a more pragmatic one (Bluhm and Borgerson, 2018). Research that reflects clinical practice is more likely to be useful in improving clinical practice.

Robyn Bluhm photoRobyn Bluhm, PhD, is an Associate Professor with a joint appointment in the Department of Philosophy and Lyman Briggs College at Michigan State University. 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, September 3, 2020. 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.

More Bioethics in the News from Dr. Bluhm: Philosophy, Mental Illness, and Mass Shootings; “Ask your doctor” – or just check Instagram?Antibiotics: No Clear CourseTo Floss or Not to Floss? That’s not the question

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COVID-19 vs. Childhood Immunization? A Bioethics Perspective from Nigeria

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

By Felix Chukwuneke, MD

Avoiding the Impending Calamity: Our Ethical Responsibility

United Nations Children’s Fund (UNICEF) has warned that COVID-19 is disrupting life-saving immunization services around the world, putting millions of children in both rich and poor countries alike at risk of diseases like diphtheria, measles and polio. UNICEF, the Sabin Vaccine Institute and Gavi, the Vaccine Alliance are also worried that thousands of children could die needlessly from the diseases that were hitherto controlled through vaccination but are now being redundant because of the lockdown and compulsory quarantine by the government of the day. UNICEF Executive Director Henrietta Fore stated that there is going to be a real problem as many of these already conquered preventable diseases for children such as measles, diphtheria and cholera are in the increase across the world.

“Immunization is one of the most powerful and fundamental disease prevention tools in the history of public health,” said Dr Tedros Adhanom Ghebreyesus, WHO Director-General. “Disruption to immunization programmes from the COVID-19 pandemic threatens to unwind decades of progress against vaccine-preventable diseases like measles.”

[WHO News release, May 22, 2020]

There is no doubt Africa will be the worst hit by this quarantine and lockdown policy. In a place where lack of education and poverty are commonplace, the rebound of these preventable diseases as a result of improper policy and control implementation will be unprecedented in the near future after we are done with the pandemic. Most governments especially in Africa did not take into consideration the sustenance of immunization programs and were more focused on the COVID-19 pandemic – the devastating effect of the disease cannot be equated to some of these childhood preventable diseases.

The quarantine and social lockdown have resulted in a drop in vaccination rates leaving several numbers of children open to diseases that were hitherto prevented. There is a need to step up campaigning once again on the importance of sustaining immunization that has been in place before the COVID-19 pandemic.

A 13-year-old male is receiving an intramuscular vaccination in the deltoid muscle from a nurse. His mother is standing behind him with her hand on his shoulder; they are smiling.
Image description: 2006 Content Provided by Judy Schmidt. This photograph shows a 13-year-old male receiving an intramuscular vaccination in the deltoid muscle, from a nurse. His mother is standing behind him with her hand on his shoulder; they are smiling. Image source: Centers for Disease Control and Prevention.

The Philosophy of Objectivism in Public Health Emergencies Such as the Coronavirus Pandemic

The mandate from a responsible government to ensure and protect the health of the public is an inherently moral pursuit with obligation to care for the well-being of its communities. In doing so the government should refrain from immediately engaging extreme measures. Further, the widespread deployment of uniform measures should first understand the peculiarity of the environments in which they will operate. Africans across many nation states, for example, live in a diversity of settings where communicable diseases are all too common. Many individuals live in poor living conditions necessitating proper advance planning of COVID-19 pandemic management. With that management, such planning should carefully consider the sustainability of the on-going vaccinations of childhood preventable diseases. Vaccinations have had an enormous beneficial impact on population health, and the related prevention of disease has been one of the single greatest public health achievements of the last century.

The questions I pose center on an exploration of which disease should rightly be given priority based on established fact. I question why there has been so much panic and fear about COVID-19. With the introduction of this novel disease, with a mortality rate lower than that of those diseases preventable by vaccination, should we permit gains made in vaccinating children against common childhood diseases to stop? With respect to more preventable diseases, especially those that affect children, why is there such an emphasis on COVID-19? Should mothers and caregivers give precedence to the COVID-19 pandemic, deferring their children’s routine immunization? Again, in an isolation and quarantine situation with strict governmental constraints on movement, how might childhood immunizations continue, especially in rural areas (assuming that accessible immunization centers are even open and operating)?

Currently, keeping to a routine immunization regimen by parents and caregivers is a challenge, especially for those who come from remote areas. The government, through the health ministry, should ideally put procedures in place for the duration of the pandemic to encourage all women to ensure that their children get access to these vaccines. It would be tragic to view this situation as a tradeoff, thus incurring the risk of returning to the horrors of polio, diphtheria, cholera and smallpox, and in doing so, allowing many to die of already controllable diseases.

Government Needs Proper Strategizing, COVID-19 Should Not Stop Normal Existence

There is no doubt that ethical challenges abound in quarantining people compulsorily, potentially against their decisions and will because of the COVID-19 pandemic. But more challenges abound when the government fails to take the precautionary measures necessary to ensure the continuity of the vaccination program for known and preventable childhood diseases. Because some of the latter are transmitted person-to-person there is, therefore, a need to provide both individual and public protection against the disease in addition to focusing on COVID-19. Though the COVID-19 pandemic may pose a health threat to many people across the globe, I suggest that there is even greater threat to personal liberty by compulsory quarantine and economic lockdown.

There is suspicion among some that the COVID-19 pandemic has been exaggerated, and that the measures currently in place across the world are not supported by the data. This doubt is illustrated by the Tanzanian President who had samples collected from goat, pawpaw and sheep for COVID-19, assigning human names to those animal samples. Reportedly, the related test results were positive, thus feeding the concerns on the accuracy of information regarding the incidence and prevalence of the infection, influence of co-morbidities, etc.

Demystifying the COVID-19 Pandemic While Achieving Health for All

Conflicting data notwithstanding, there are those who hold the opinion that measures taken by governments around the world are based on fear and speculations, and ultimately, might prove ineffective. It is argued here, that denying people their right to personal movement has a preventable impact on established vaccination programs, programs with known effectiveness in the reduction of mortality among children. High numbers of people are still being infected by those preventable diseases. It might also be argued that at present the imposition of a uniform isolation strategy is premature, especially with conflicting reports on its mode of transmission and degree of virulence. Perhaps it would be prudent to lay emphasis on practicing safe habits, building and supporting one’s immune system, maintaining proper hygiene, social distancing, and taking care of those most vulnerable ones among us such as the children and the elderly.

Felix Nzube Chukwuneke photo

Felix Nzube Chukwuneke, is a Fogarty Trained Bioethicist and Professor of Oral & Maxillofacial Surgery and Dean of Dentistry in the College of Medicine, University of Nigeria Nsukka (UNN) Enugu Campus. He is Chair of the UNESCO Bioethics Unit at the College of Medicine, University of Nigeria; Chair of the College of Medicine Research Ethics Committee (COMREC) and Chair of the Eastern Nigeria Research Ethics Forum (ENREF).

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 9, 2020. 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.

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COVID-19 Vaccine: “Not throwing away my shot”

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

By Sabrina Ford, PhD

In the advent of the novel coronavirus (COVID-19) pandemic, there is an underlying belief in the United States that a COVID-19 vaccine may be the Holy Grail, the silver bullet to assuage the pandemic and open up the quarantine doors. Yet, there is a divide in the United States regarding vaccination acceptance. The Centers for Disease Control and Prevention (CDC) reports less than 50% of adults receive the vaccine for influenza (flu). In the 2017-2018 flu season, 37.1% received the vaccine, the lowest rate in ten years. The rate increased to 45.3% in 2018-2019. In a recent study reported in The Boston Globe, authors Trujillo and Motta found that 23% of persons surveyed said they would not get the COVID-19 vaccination. The study breaks it down further regarding anti-vaccination attitudes (also known as “anti-vaxxers”) and found that 16% of respondents identified themselves as anti-vaxxers, and of those, 44% said they would not get the COVID-19 vaccine. The researchers contend that anti-vaccine sentiment still exists in spite of the deadliness of COVID-19.

Vaccine debate

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Image description: An illustration of a light green circle with a vaccination syringe in the center that is surrounded by green viruses. Image source: Alexandra_Koch/Pixabay.

As Americans, we want what we want how we want it. For some of us, the vaccine cannot come fast enough, and it better be effective. Others don’t plan to get it even when it is available. I have set up a dichotomous choice, but indulge with me in thinking through the debate. Many philosophical and ethical discussions occur in academic research—and particularly in mainstream and social media—highlighting opposing views of those who choose to vaccinate and those who do not. Often, these two positions fall along partisan lines, but not in the way that we might expect. The anti-vaccine movement began with the political left, but spread to the religious right, conservatives, and libertarians.

Approximately 20 years ago, a flawed but influential study linked the Measles, Mumps, Rubella (MMR) vaccine to autism. It started a hot debate fueled by staunch supporters of anti-vaccination from both sides of the aisle. The anti-vaxxer movement took hold with powerful liberal voices, but in recent years has become convenient for the religious and far-right who aim to keep government out of personal decisons. A 2015 Pew Research Center Study found that 12% of liberals and 10% of conservatives are opposed to vaccination. Herein lies my question: to what can we attribute the strong stance that anti-vaxxers take regardless of political position? Why does this question matter? America is a free country. However, the movement warrants an understanding in the midst of a pandemic of an extremely deadly disease whereby science tells us that a vaccine may mitigate infections and death.

Facts are stubborn things

One commonality between the liberal and conservative anti-vaccine stance is a lack of trust in science and medicine, and belief in “alternative facts.” This is particularly true within the anti-vaxxer movement. Some don’t trust science based on real life experiences or notable past deceptions in public health interventions, such as the Tuskegee Experiments, Havasupai Diabetes Project, Henrietta Lacks, etc. Antithetically, the autism study was deceptive by negating the lifesaving MMR vaccine as harmful. This myth has persisted over time, fueled by the anti-vaxxer movement and the discount of science as faulty, dangerous, driven by big government, and against individual choice. Facts versus feelings further complicates the human cognitive decision-making process. For example, in the case of vulnerable children with autism for whom science has not fully unraveled a cause or treatment, anti-vaxxers feel they can place blame on the MMR vaccination. Feelings contribute to the uptake of faulty information and fake news via social media, in turn drowning out the facts.

Herd immunity

Vaccines have been one of the greatest public health successes in the world due in large part to herd immunity. Herd immunity comes with centuries of science resulting in the reduction of deadly diseases. The cursory explanation for herd immunity is: if a large proportion of a community is vaccinated, the lower the collective risk to the community. The algorithm suggests at least 80-90% of a community needs to have immunity to a disease and/or be vaccinated to protect the proportion of persons with compromised health conditions who cannot be vaccinated. The range in vaccination rates is dependent on the effectiveness of the vaccine. We have seen the eradication of smallpox and polio because of a highly effective vaccine delivered to most of the children in the U.S. This was achieved through mass immunization and extremely effective public health messaging. Most recently, buy-in to herd immunity has devolved from a fear of deadly disease to a fear of the very thing that prevents deadly disease. As a result, we have seen a resurgence in measles, which can be deadly for children with compromised immune systems. The science of herd immunity is powerful but relies on collectivism and social responsibility. The requirement that a large proportion of a community needs to be vaccinated to protect others cuts across American values of individuality and freedom of choice.

Final thoughts

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Image description: Fabric face masks of various colors and patterns are arranged flat on a yellow surface. Image source: antefixus21/Flickr Creative Commons.

Before COVID-19, we lived in a different era with some generations never experiencing or witnessing extremely contagious, deadly diseases, confirming a belief that we can individually control our own disease states. Now, we are faced with a history making, highly infectious, deadly disease. Will we adopt a philosophy of sacrificing a bit of comfort by quarantining, wearing masks, or experiencing the pinch of a vaccination to save the lives of others? The jury is still out on that debate. We have witnessed segments of our society rebel and even retaliate against the idea of vaccination. Yet, scientists are working faster than ever to develop an effective COVID-19 vaccine, and the U.S. government has promised to enable the Food and Drug Administration (FDA) to relax clinical testing protocols to push the vaccine out in order to save lives. No, the vaccine will not be the silver bullet, but it has the potential to augment natural immunity to work as a tool of collective protection. Is the deadliness of COVID-19 enough to override the need for anti-vaxxers to hold onto personal choice?

This is not an indictment on one’s personal choice not to be vaccinated, but an opportunity to ponder individuality versus social responsibility for the greater community benefit. COVID-19 has been a game changer on human behaviors, requiring us to social distance and wear masks for the greater good. Will we embrace social responsibility and be vaccinated to save lives? How do we reconcile our individualism with the adoption of collectivism?

ford-sabrina-2020Sabrina Ford, PhD, is an Associate Professor in the Department of Obstetrics, Gynecology and Reproductive Biology and the Institute for Health Policy in the Michigan State University College of Human Medicine. Dr. Ford is also adjunct faculty with the Center for Ethics and Humanities in the Life Sciences.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Monday, June 1, 2020. 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.

More Bioethics in the News from Dr. Ford: Contemplating Fentanyl’s Double Duty

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Episode 7: ‘Imaging and Imagining Illness’ with Devan and Darian Stahl

No Easy Answers in Bioethics logoEpisode 7 of No Easy Answers in Bioethics is now available! This episode features guests Devan Stahl, Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics and Human Development, and Darian Goldin Stahl, artist and printmaker. This episode delves into the intersection of fine art, illness, disability, and self-identity. The recently released book Imaging and Imagining Illness: Becoming Whole in a Broken Body began as a collaboration between sisters Devan and Darian, one with personal origins. The edited volume examines the impact of medical imaging technologies on patients and our wider culture. In this episode, they discuss Darian’s artistic process, how audiences have reacted to the artwork, and how they came to invite other scholars to build on their work.

Ways to Listen

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 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.

What level of risk will be tolerated for interventions that are developed for treating “pre-diseased” patients?

bbag-blog-image-logoCrossing the Biology to Pathobiology Threshold: Distinguishing Precision Health from Precision Medicine

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Diseases have long been defined by their symptoms, and therefore patients have typically been treated when they are symptomatic. However, through advances in “omics,” wearable sensors, insertable microscopes, liquid biopsies, point-of-care pathology, and other innovations, it is possible to make a molecular diagnosis prior to apparent symptoms. These tools will enable a transition from Precision Medicine where the molecular etiology is determined after symptoms appear, to Precision Health in which the molecular etiology of diseases can be anticipated and symptoms averted. However, is it ethical to treat “asymptomatic disease” and at what cost to the healthcare system? What level of risk will be tolerated for interventions that are developed for treating “pre-diseased” patients? Since many of these assays will predict likelihood of disease and not absolute progression to disease, what level of certainty is needed to intervene at all? Medicine is being redefined and we are behind in understanding what is meant by the simple terms health and disease.

October 11 calendar iconJoin us for Dr. Contag’s lecture on Wednesday, October 11, 2017 from noon till 1 pm in person or online.

Dr. Christopher H. Contag is the chair of the inaugural Department of Biomedical Engineering and founding Director of the Institute for Quantitative Health Science and Engineering at Michigan State University. Dr. Contag is also Professor emeritus in the Department of Pediatrics at Stanford University. Dr. Contag received his B.S. in Biology from the University of Minnesota, St. Paul in 1982. He received his Ph.D. in Microbiology from the University of Minnesota, Minneapolis in 1988. He did his postdoctoral training at Stanford University from 1990-1994, and then joined Stanford faculty in 1995 where he was professor in the Departments of Pediatrics, Radiology, Bioengineering and Microbiology & Immunology until 2016. Dr. Contag is a pioneer in the field of molecular imaging and is developing imaging approaches aimed at revealing molecular processes in living subjects, including humans, and advancing therapeutic strategies through imaging. He is a founding member and past president of the Society for Molecular Imaging (SMI), and recipient of the Achievement Award from the SMI and the Britton Chance Award from SPIE for his fundamental contributions to optics. Dr. Contag is a Fellow of the World Molecular Imaging Society (WMIS) and the recent past President of WMIS. Dr. Contag was a founder of Xenogen Corp. (now part of PerkinElmer) established to commercialize innovative imaging tools for biomedicine. He is also a founder of BioEclipse—a cancer therapy company, and PixelGear—a point-of-care pathology company.

In person: This lecture will take place in C102 East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

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Announcing the Fall 2017 Bioethics Brownbag & Webinar Series

bbag-icon-decThe Center for Ethics and Humanities in the Life Sciences at Michigan State University is proud to announce the 2017-2018 Bioethics Brownbag & Webinar Series, featuring a wide variety of bioethics topics. The fall series will begin on September 13, 2017. You are invited to join us in person or watch live online from anywhere in the world! Information about the fall series is listed below. Please visit our website for more details, including the full description and speaker bio for each event.

Fall 2017 Series Flyer

sept-13-bbagExpanded Carrier Screening for an Increasingly Diverse Population: Embracing the Promise of the Future or Ignoring the Sins of the Past?
How do we explain to patients what results might mean for their baby when they have only been validated in other populations?
Wednesday, September 13, 2017
Kayte Spector-Bagdady, JD, MBioethics, is a Research Investigator in the Department of Obstetrics & Gynecology and leads the Research Ethics Service at the Center for Bioethics & Social Sciences in Medicine at the University of Michigan Medical School.

oct-11-bbagCrossing the Biology to Pathobiology Threshold: Distinguishing Precision Health from Precision Medicine
What level of risk will be tolerated for interventions that are developed for treating “pre-diseased” patients?
Wednesday, October 11, 2017
Christopher H. Contag, PhD, is a John A. Hannah Distinguished Professor of Biomedical Engineering and Microbiology & Molecular Genetics, Chair of the Department of Biomedical Engineering, and Director of the Institute for Quantitative Health Science and Engineering at Michigan State University.

nov-29-bbagProspects, Promises and Perils of Human Mind-Reading
What are the prospects for such technology to be widely used?
Wednesday, November 29, 2017
Mark Reimers, PhD, is an Associate Professor in the Neuroscience Program in the College of Natural Science at Michigan State University.

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Defining The Spectrum of “Normal”: What is a Disease?

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series

By Jennifer Carter-Johnson, JD, PhD

The world of Gattaca once seemed a faraway place where some babies had genetic defects corrected before birth resulting in two classes within society. However, a recent report that a Swedish scientist, Fredrik Lanner, has begun to edit the genome of healthy embryos has made the movie seem ever more probable. This report follows on the heels of reports from China that two teams have edited non-viable embryos to correct for a blood disease and to make the embryos more resistant to HIV infection. Embryo gene editing experiments have also been approved in the UK, and while the U.S. National Institutes of Health refuse to fund such experiments, some state funding agencies are beginning to consider it. The eventual goal of these experiments is to correct genetic diseases at conception, saving people from living lives with Huntington’s disease or with genetic predispositions for heart disease or breast cancer.

Part of the DNA sequences from the human genome
Image description: a page of a book displays part of the DNA sequences from the human genome. Image source: Flickr Creative Commons.

There are a myriad of concerns connected with the editing of human embryos as discussed in the reports mentioned above. Usage of embryos for any research is controversial since some believe that embryos should have rights equal to a born person. Beyond the basic question surrounding all embryonic research, scientists have questioned whether we should be creating designer babies, citing concerns that the use of embryo editing might inadvertently create new diseases. Additionally, access to the technology might be limited due to the high cost, giving rise to a situation where those who can afford to edit their child’s genome will have the advantages of selecting for children who are highly intelligent, highly athletic and low health risks. In a society where class inequalities are becoming ever more pronounced, use of embryo editing could exacerbate the problem by unevenly allocating not only resources but also abilities to those with money.

Perhaps one of the most difficult questions to be answered relates to which genes should be modified. As an abstract concept, using embryonic gene editing to cure a disease is more palatable to many than choosing eye color and height, but identifying a “disease” may be more complicated than it looks. As researchers identify the genetic basis for conditions that impact a person’s health, it forces us to ask if those conditions are diseases or merely a variation on the normal of human existence.

Some mutations that increase susceptibility to disease are actually beneficial mutations in the response to other diseases. The mutation that leads to sickle cell anemia protects against malaria in people who only have one copy of the mutation. Mutations in the T cell receptor CCR5 make a person more susceptible to psoriasis and infection by West Nile Virus but protect against HIV and smallpox infections. Obviously, we don’t know all the mutations that are beneficial against diseases, merely that some people get more or less sick when confronted with certain pathogens. It is possible that super-healthy, specifically-designed children would be ill-equipped to defend against an emerging disease where some members of a genetically diverse population would have protection.

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Image description: a bright blue frame surrounds an artist’s embroidered rendering of the human chromosome map. Image source: Flickr Creative Commons.

Other disease-causing genetic mutations may also shape traits that society views as a positive. For instance, some research links the genetic predisposition for bipolar disorder with high IQ and enhanced creativity. Would the individual or society benefit from ameliorating the former at the cost of decreasing intelligence and creativity? Conversely, if the intelligence and/or creativity are genetically linked to bipolar disorder, well-meaning parents, seeking to increase the potential of their child, may exacerbate a genetically related mental illness.

Finally, one person’s disease is another person’s normal, community and heritage. Deaf parents often resist cochlear implants in their deaf children. These parents don’t view deafness as a disability but rather a community with its own language and customs. This view stands in contrast to the views of many in the hearing community who view deafness as a defect to be cured. Indeed, most deaf people function well in both deaf and hearing areas of society. If embryonic gene editing became a norm, deafness might be “fixed” – a process that some in the deaf community would liken to genocide. Similarly, many in the autistic community refuse to define themselves as having a disease. Not too long ago, homosexuals were considered mentally ill, a view that has become anathema as research into and acceptance of alternate views of sexuality have grown. Understanding the genetic underpinnings of autism and homosexuality would open them to a similar debate about embryo editing.

Some variations from normal are not diseases, they are merely differences. Some diseases or predispositions to diseases mask a greater benefit to the person or to society as a whole under certain conditions. Still others are life threatening diseases that carry little to no benefit as compared to the harm. We don’t always recognize these alterations for what they are, which makes determining which genes to modify a very difficult task as embryo editing becomes more feasible.

j-carter-johnson

Jennifer Carter-Johnson, JD, PhD, is an Associate Professor of Law in the College of Law at Michigan State University. Dr. Carter-Johnson is a member of the Michigan State Bar and the Washington State Bar. She is registered to practice before the U.S. Patent and Trademark Office.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, November 3, 2016. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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Ebola: A Tough Teacher

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Ann Mongoven, Ph.D.

The unfolding tragedy of Ebola in West Africa offers painful ethical lessons about international epidemic control. International public health organizations should re-frame infectious disease preparedness along lines of natural disaster response. Stricken regions may need not only expert advice, but also the infusion of mobile infrastructure. Unstricken (as of yet?) populations must remember that the greatest danger of epidemics may be the psychological tendency to ascribe “Otherness” to the sick or vulnerable.

Lesson 1: Basic health systems are basic to health care.

This should be, but regrettably is not, a case of stating the obvious. Insuring basic medical supplies are on hand, designing incentives to encourage distribution of health professionals according to needs, and equalizing access to care are economically and politically tall orders in wealthy countries, let alone resource-challenged ones. Developing basic health infrastructure does not give glory to aid organizations the way targeting a specific disease does—even though virtually all disease-fighting depends on that.

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Army researcher fighting Ebola on front lines. Photo by Dr. Randal J. Schoepp.

It is a basic problem that not all countries have basic health systems in place, while others have systems so basic that there is no reserve to confront a new threat. Ebola is exploding in countries that were already systems-stretched. This contributes not only to its spread, but also to what Medicine Sans Frontiers director Dr. Joanne Liu calls the “emergency unfolding within the emergency.” The demands of trying to contain Ebola have drained all regional health resources and staff, leaving people with “ordinary” acute crises—malaria, tuberculosis, AIDS, complicated childbirth—with no care.

International epidemic control vehicles such as the CDC’s famed Epidemiological Intelligence Service and similar units within the World Health Organizations are framed as consultants to health systems. They provide concerted expertise, surveillance systems, and sometimes highly specialized laboratory services not expected to be available locally. But advice to health systems, no matter how good, can’t be effective when there is no effective health system to take the advice, or when a minimal health system is inundated by an epidemic.

The campaign against Ebola needs an infusion on the ground of organized public health professionals who will not only roll up their sleeves and don gloves, but also bring the gloves. Ebola teaches that international epidemic control must be modeled after international aid for natural disasters. Mobile units that can deliver an infrastructure—in this case protective gear, IVs and tubing, clean needles, disinfectant, etc.—should be stockpiled for ready deployment. Disaster relief first responder organizations should include infectious disease professionals and volunteers. As Dr. Liu argues, international response to Ebola should have looked more like international response to the earthquake in Haiti.

Lesson 2: Disease stigma is as life-threatening as disease.

This Ebola outbreak began in March. It was a multi-town outbreak by the time it was recognized, the result of travel to the funeral of the first victims by out-of-town relatives. Initially the outbreak straddled the border of three countries: Guinea, Sierra Leone, and Liberia. (It has since spread to Nigeria, probably by air travel.) Epidemiologists and aid workers sounded an international alarm in response. The world yawned.

In her classic, Illness as Metaphor,¹ Susan Sontag dramatized the delusional tendency of the well to ascribe to the sick the character of a threatening “Other.” The sick Other is perceived as somehow morally inferior, somehow different, somehow vulnerable in ways that the well wish not to think so of themselves.

In this case, the view of the Other may have preceded the epidemic. The world’s initial yawn reflects the extent to which Africans are generally viewed as Other by many of the world’s non-African affluent. A terrible threat causing lost lives may have been dismissed as routine for those Others in West Africa, though it would be anything but for themselves. And despite the dispersed initial presentation, a wrong-headed conception of isolated rural villages lulled the international community into thinking the epidemic would be quickly contained. When SARS broke out in urban China and Singapore, everyone realized the danger of geographic mobility, from migrant workers to bankers. But somehow the geographic mobility of Africans, and the interconnection between urban and rural Africa, came as a surprise.

People already defined as Other become even more Other than other ill when they get sick. Yet the begged question of whether racism contributed to the too-little-too-late international response to the epidemic seems studiously avoided in public discussion. Hurrah for the courage of the satirical Onion, which headlined a recent edition “Ebola Vaccine At Least 50 White People Away.”

President-Sirleaf
Liberian President Ellen Johnson Sirleaf

The power of Liberian President Ellen Johnson Sirleaf’s personal call to President Obama—requesting that highly limited supplies of new experimental drugs be made available to some West African patients, not only to returned white expatriate aid workers—rested on the unacknowledged racism that it dramatically combatted. Here was the Harvard-educated African president of a nation created by ex-American slaves begging the half-African president of the United States to include Africans in potentially life-saving therapeutic drug trials for an African epidemic. (Ironically, due to pharmaceutical outsourcing, Africa may bear disproportionate ethical risk for the routine development of new drugs in clinical trials—without necessarily receiving corresponding benefit.)

The characterization of victims as Other intertwines with the rhetoric of a “war on disease” in dangerous ways. The prevalence of war metaphors for medicine and public health increased after the totalizing nature of the second world war. That family of metaphors has been newly accentuated by current world attention on international terrorism. But what are we “battling” when we “fight” that “terroristic” virus, Ebola? As Sontag notes, there is a fine line between characterizing disease as the enemy and concluding the diseased are the enemy. If “harborers of terrorists” can be treated as terrorists in the “war on terror,” then why not Ebola patients? Ebola sufferers become viewed not as victims of bad luck, but as morally suspect.

Ascribing ontological and moral Otherness to sick people fuels disease stigma that is as life-threatening as the disease itself. It encourages people to deny illness for the sake of self- and family-protection. This is especially true when local resources are strapped to the point where reporting or quarantining may bring down the full weight of disease stigma without offering significant medical treatment. The degree of stigma that has come to be associated with Ebola, as well as the resistance of sick or vulnerable people to being portrayed as the enemy, explains otherwise health-defeating phenomenon in the epidemic. In Monrovia, Liberia, healthy people overran an Ebola clinic, urging patients to leave, scattering bloody sheets, and claiming there is no such thing as Ebola. Also in war-recovering Liberia, the war-like image of barbed-wire fencing quarantining a 50,000-person suburb prompted the defensive (but not to Ebola) response of the inhabitants storming the barricades. Social re-framing to reduce disease stigma will be as important as any medical breakthrough to the containment of Ebola—and of future terrifying, but not terrorist, epidemics.

References:

mongovenAnn Mongoven, Ph.D., is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Pediatrics 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, September 11, 2014. 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.