CRISPR Dangers Highlight the Need for Continued Research on Human Gene Editing

Listen to this story
Bioethics in the News purple and teal icon

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

By Jennifer Carter-Johnson, PhD, JD

The excitement and potential of CRISPR to treat severe genetic conditions by editing disease-causing DNA has taken an unexpected hit. A recent Wall Street Journal article highlighted the unexpected results from a CRISPR study in which attempts to edit a human gene responsible for blindness resulted in the loss of the entire chromosome from the cells in the embryos. These results echo another study conducted in human cell lines published earlier in 2019.

CRISPR is a targeted gene editing process that allows scientists to direct genetic modifications with far more precision than prior procedures. CRISPR has been touted as a gigantic leap in the ability to modify DNA by creating or repairing pinpoint DNA mutations without affecting other areas of the chromosome on which the gene resides. The recent study indicates that the technique might not be as straightforward in humans – and thus neither will be its use to fight disease.

Blue DNA double helix puzzle with missing pieces
Image description: A partially assembled puzzle that is an image of blue double helix DNA molecule structures. Image source: Arek Socha/Pixabay

CRISPR Technology – Promise and Problems

The value in CRISPR mediated genetic modification can be seen in a wide variety of biotechnology products, such as genetically modified crops and new biologics. But perhaps the most exciting and most controversial potential for CRISPR can be found in the desire to modify embryonic genomes to remove genetic abnormalities for which we currently have no cure.

This promise of embryonic gene editing is appealing not only because it would remove the condition from the child born from the gene-edited embryo, but also because the offspring of that child would also be free of the condition. CRISPR gene editing – because it is done at the embryonic stage – creates germline mutations that are passed to future generations. In a therapeutic use of CRISPR, those mutations would be cures for often untreatable diseases.

However, it is this very promise that raises many of the problems with CRISPR embryonic gene editing. Much debate has surrounded embryonic gene editing. Until this recent news, there were fears that CRISPR may make gene editing too easy. The technological development of CRISPR in embryonic gene editing is moving at a breakneck pace as scientists around the world are working on procedures. Biohackers work in their garages and livestream the use of CRISPR to edit their own genomes.

Many are debating which genes should be targeted and how fast the research into actual trials should proceed. Most agree that severe diseases would be the best place to start, but should the technology be deployed for cosmetic benefits such as eye color, or diseases for which a treatment exists? The dangers of CRISPR editing are unclear, and there has been an informal moratorium on the use of the technology to create children. Despite that, there has been at least one rogue scientist who has created genetically modified embryos and brought them to full term birth.

International Policy on Human Gene Editing

The scientific research is not occurring in a vacuum. Each country decides how CRISPR can be used in its medical system – both when the technique is safe enough and on which diseases it should be used.

An international commission recently pronounced that the technology is not ready for clinic implementation because scientists don’t understand the full safety issues surrounding its use in human embryos. The commission described some of the potential clinical uses in the future and outlined a basic safety protocol for approval.

One of the creators of CRISPR, Jennifer Doudna, has also spoken out against applying CRISPR too hastily to embryonic gene editing. 

Based on the recent studies showing loss of chromosomes, the international commission and other scientists are correct to call for a moratorium on clinical embryonic gene editing.

Blue and green DNA double helixes and binary code
Image description: An abstract image of blue and green double helix structures and binary code (zeros and ones) against a black background. Image source: Gerd Altmann/Pixabay

CRISPR – The Path Forward

The setback in CRISPR gene editing does not mean that the technology and research should be discarded. The potential to change lives is too great; however, the dangers of use with our current understanding are even greater. So how do we move forward with CRISPR in embryonic gene editing? The answer must include balance – in research strategies and in voices.

While the technology is not ready for clinical use, and we have not yet determined which uses would be appropriate if it were available, the science should not stand still. The research surrounding CRISPR gene editing will yield insights into human biology that we cannot predict. For example, the loss of chromosome length in human embryonic cells undergoing CRISPR treatment seems to be different than the response of other species of embryonic cells. And debates about the appropriate use of the technology will allow us to discover more about ourselves as humans. 

As we debate the best way to develop and deploy CRISPR technology, we should look to a variety of stakeholders. Scientists have a solid track record in understanding when recombinant DNA technology has potentially hazardous implications. In the 1970s, the Asilomar Conference allowed scientists to put together research guidelines that allowed the technology to be developed without harming public health. In fact, the international scientific consensus not to use the technology such as described above indicates that scientists are beginning that work. Such a moratorium on clinical uses gives us time to understand how to deploy the technology in the safest manner.

Additionally, there is a role for the voices of the patients whose lives could be changed by the technology. Patients may not be in the best place to judge when the technology should be deemed safe enough to deploy, but they certainly will have input about which mutations cause hardships that merit the risk of germline editing. Many of these patients already work with scientists on potential treatments for their diseases. CRISPR discussions may open another avenue for many.

Finally, there is a role for legal regulation of the use of CRISPR. Governments should listen to the voices of scientists and potential patients in drafting these regulations. But as shown by the example of at least one rogue scientist, there needs to be teeth to the moratorium on CRISPR clinical use at this time. CRISPR and its use in human gene editing raise complicated issues and hold great promise as a powerful tool to defeat genetic diseases. The development of those technologies will not be straightforward or without risk and will require more basic science research to achieve clinical efficacy. But with proper planning, we may learn more about ourselves as humans on the path to a cure.

Jennifer Carter-Johnson photo

Jennifer Carter-Johnson, PhD, JD, is Associate Dean for Academic Affairs and Associate Professor of Law in the Michigan State University College of Law. Dr. Carter-Johnson is a member of the Michigan 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 Tuesday, December 15, 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. Carter-Johnson: Biohacking: How a DIY Approach to Biology Can Shape Our FutureWeb of Interests Surrounding Medicines Makes Patient Access Increasingly DifficultHumanity in the Age of Genetic ModificationDefining The Spectrum of “Normal”: What is a Disease?Dawn of False Hope: Spread of “Right To Try” Laws across the U.S.

Continue reading “CRISPR Dangers Highlight the Need for Continued Research on Human Gene Editing”

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

Listen to this story

Bioethics in the News purple and teal icon

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.

Sean Valles photo

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

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

A COVID-19 Vaccine Won’t Stop the Pandemic

Listen to this story
Bioethics in the News purple and teal icon

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

By Parker Crutchfield, PhD

As the COVID-19 pandemic continues to maim and kill thousands and devastate countless others, many are pinning their hopes of returning to a life resembling normal upon the development of a vaccine. The Centers for Disease Control and Prevention has even advised states and cities to be prepared to allocate up to 800 million doses of a vaccine in late October or early November. But it is highly unlikely that a vaccine will do much to stop the pandemic and related significant harm. For a vaccine to get us out of the pandemic, it needs to be developed, distributed, and received. Regardless of its development and distribution, if people don’t take it, then it won’t do any good. And there isn’t much reason to think that many people will take it, at least initially.

Image description: an illustration of a bottle with a white label that says “COVID-19 Vaccine” in black text. The bottle is different shades of blue with a dark blue background. Image source: Shafin Al Asad Protic/Pixabay.

Allocation Models

Recently, a team of scholars advocated for a scheme to allocate the eventual vaccine, the Fair Priority Model. This model, like most models of allocation, assumes that the vaccine will initially be scarce. On this assumption, the allocation then proceeds in phases, the first preventing the most significant harms such as death, the second preventing other serious harms and concomitant economic devastation, and the third addressing community transmission. Other models may set different priorities by, for example, putting health care workers or racial and ethnic minorities first in line.

Developing allocation models is important. But they all rest on a questionable assumption: that the people to whom the vaccine is allocated actually want it, or are at least willing to take it. Scarcity is just as much a matter of demand as it is a matter of supply.

Demand for a Vaccine

Recent evidence suggests that, generally, people won’t take the vaccine initially, even if offered. Almost 80% of people said they wouldn’t get it, if available, at least until others have done so, according to a recent CBS News poll. A return to something resembling normal life requires around 70-80% of the population to be immune.

Mistrust of the politicization of vaccine development or of the scientific practices involved may be responsible for much of the population’s apparent hesitation. But reasonable people may also simply not want to be first in line for a new immunity enhancer. Thus, whatever criteria are used, the allocation scheme must incorporate consideration of demand, not simply supply.

For example, the first allocation according to the Fair Priority Model should go to those people whose being vaccinated would most likely prevent death and who want the vaccine. If the vaccine is allocated to health care workers, the allocation must be to people who are health care workers and who want the vaccine. That is, demand for a vaccine should be just as much a component of allocation models as any other consideration.

Voluntary or Compulsory?

Allocation models must consider the population’s demand for a vaccine in order for such models to provide useful guidance on distribution. Given the apparent lack of demand, giving people the choice of whether to take the vaccine is unlikely to stop the pandemic any time soon. But demand only matters if people have an option. One way to avoid having to consider the population’s willingness to take the vaccine, and to dramatically decrease the time it takes to boost 70-80% of the population’s immunity, is to take that willingness out of the equation and make it compulsory.

Already some vaccinations are compulsory, depending on a person’s circumstances. Some have argued that the COVID-19 vaccine should be mandatory. One common principle in philosophy is that ought implies can. This means that what one’s moral obligations are hinges on what one can do. Even if one can justify compulsory COVID-19 vaccination, it’s unlikely that this is something that can be achieved. Compulsory vaccination is not something we can do, which means it’s not something we should do.

Consider, for example, the widespread reluctance to wear a mask and the flouting of social distancing guidelines. Wearing masks and social distancing are very minor burdens to bear for others’ well-being. While it is true that mask and social distancing mandates push against unrestrained permission to do what you want when you want to do it, others be damned, these intrusions are arguably minor (though are admittedly disruptive). Requiring 70-80% of the population to go someplace and get poked by a needle on multiple occasions or sprayed in the nose are much greater liberty intrusions. It is a pipe dream to think that a vaccine mandate would be accepted by the very same population who refuses to bear the more minor burdens of mask wearing and social distancing, which amounts to at least 29% of the population, enough to undermine our ability to stop the pandemic.

Different Baskets for Our Eggs

If administration of the COVID-19 vaccine is voluntary, not enough people will volunteer to get it. If administration is mandatory, still not enough people will get it. The vaccine’s allocation can only be either voluntary or mandatory. Either way, not enough people will get it, at least at first. The only conclusion to draw is that a vaccine is not going to stop the pandemic, at least any time soon. If ought implies can, we ought not pin our hopes upon a vaccine, because we cannot hope for it to work to stop the pandemic. There is no light at the end of the tunnel.

Image description: a narrow tunnel between two brick walls that leads to darkness. Image source: Peter H/Pixabay.

However, incentives and disincentives can change a person’s mind. Other than the incentive intrinsic to getting the vaccine—the preservation of human life and well-being—are there others that might make people more willing to get it, such as money or tax breaks? Or are there disincentives to vaccine refusal that might convince someone it is better to get it than it is to refuse? Carrots or sticks?

If neither, then we’re in for the long haul.

Parker Crutchfield photo

Parker Crutchfield, PhD, is Associate Professor in the Program in Medical Ethics, Humanities, and Law at the Western Michigan University Homer Stryker M.D. School of Medicine, where he teaches medical ethics and provides ethics consultation. His research interests in bioethics include the epistemology of bioethics and the ethics of enhancement, gene editing, and research.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, October 8, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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. Crutchfield: Trust and Transparency in Quarantine; Public Health Crisis Warrants Liberty RestrictionsWe Should Tolerate and Regulate Clinical Use of Human Germline Editing

Click through to view references

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

Listen to this story:

This post is a part of our Bioethics in the News seriesBioethics in the News purple and teal icon

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

Click through to view references

Women cannot afford “nice”: The unpaid labor of gendered caregiving

Listen to this story:

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

By Karen Kelly-Blake, PhD

Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” -Audre Lorde

Much has been written about finding meaning in illness. Others have written about finding meaning in caregiving. But taking care of someone else’s s!#t has its own intrinsic meaning, and for much of the time, it’s not all good.

For some, doing this work may allow them redemption—to repent for past wrongs, or it might allow them to display their humanity in ways they have not done before. Some may experience joy with self-sacrifice. I wish you well. Amid the crucible, women are performing all sorts of gendered work, and especially gendered care work. What do I mean by that? Women perform the majority of caregiving work to family and friends, i.e. women are the ones taking care of someone else’s s!#t. This work is unpaid, labor intensive, and career limiting if not career destroying.

Multitasking woman with six arms illustration
Image description: An illustration of a faceless woman with six arms, each arm holding objects that represent a particular set of tasks: correspondence, computer work, food, entertainment, cleaning, and childcare. Image source: Multitasking Vectors by Vecteezy.

Care work offers few rewards, but it is necessary, and it is often silently expected of women. Unpaid labor that diminishes or denies opportunity for growth and sustenance is unfair, unjust, unsustainable, and wrong. Caregiver resilience may be a thing but is most likely a statement of privilege. Women do the work to the detriment of self-care, careers, outside friendships and interests, and other family relationships. Un- and under-paid gendered care work is a real and present danger to the overall wellbeing of women. As a society, we cannot keep telling women that this kind of gender discrimination in care work, especially for their family, is okay. It is not okay. Women must acknowledge all the ugliness that comes with taking care of someone else’s s!#t—the resentment, anger, frustration, disappointment, loss, fear, disgust, exhaustion, defeat.

So, who will do this work?

Dare I say, salaried home health assistants with all the benefits afforded fully employed persons—health insurance, retirement, educational assistance, PTO, etc. BUT then, who will do that work? Women, and more specifically women of color and immigrants. Whether women do it as unpaid family labor or as salaried health aides, women do care work. It may be reasonable to assume that the salaried worker may be better able to handle the emotional demands of the work. The unpaid family care worker is burdened with history, regrets, slights, insults, lies, disappointments, unforgiven and unforgivable acts, whereas the salaried care worker is not burdened with that baggage, and thus, may be a better and perhaps even a more caring caregiver. Absent the burden and weight of historical relationship bonds, women—as daughters, sisters, spouses, and mothers—may be able to find meaning in just being themselves.

Although the inequity of gendered work has always been there, the COVID-19 pandemic has shed revealing light on this inequity, just as it has on racism. Women are performing job duties remotely from home, becoming teachers, chefs, activity directors, housekeeping staff, laundry workers, and of course the calm in the storm, etc. Working the second shift does not go far enough in describing that reality—women hold on average about 100 jobs that are unpaid! These jobs historically have been the purview of women, but gendered work in the home is the cause of much friction in marriages. Moreover, women are balancing care of children with the care of parents, at times both their own and those of their spouse. Those women fortunate enough to retain their jobs and work remotely were immediately immersed in work that was unfamiliar and, in many cases, unwanted—24/7 care and attention to children, spouses, and others. For those caring for the ill, the disabled (mentally, physically, or cognitively), or the aged, or any individual with any range of functional and psychological limitation, the pandemic significantly increased the workload. Many people do this care work because they want to, out of whatever love and obligation they have for the care receiver. For others, there is no one else to do the work and it may feel, and indeed be, life limiting. Engaging in this work during a pandemic is especially challenging.

Oftentimes, a crash course in highly technical aspects of care (flushing ports, inserting feeding tubes, cleaning wounds, managing LVADs, etc.) leaves one completely bewildered. This disjuncture between necessary specialized care exposes the schism in care work that overwhelms and burdens.

Photo of woman on the floor with hands over her face
Image description: Image description: A woman sits on the floor leaning against the back of a couch. Her elbows are resting on her knees with her hands clasped together over her face, eyes closed. Image source: Pixabay.

Because of shelter-in-place orders, the pandemic has also heightened concerns about domestic violence, child abuse, elder abuse, and alcohol and substance use disorders. We consequently will need to ramp up behavioral health and trauma-informed care services. Sadly, history predicts how unlikely we are to effectively meet this challenge. Essential caregivers unable to work remotely have had to expose themselves and their children to increased risk of disease, because their children had to remain in daycare or in multigenerational spaces with no means to isolate.

Gendered care work can no longer hide under the auspices of family love and selflessness. Caregivers oftentimes die before the care receiver. There is nothing heroic or laudable about a preventable early death. Too much togetherness can breed resentment. There is always something needed, an ask or a want. There is little give in return. Even a sincerely offered “thank you” neither diminishes nor alleviates profound fatigue.

How do we mitigate the harmful effects of such inequitable gendered expectations?

  • Recognize the gender inequity of care work and the harm such blindness inflicts.
  • Pave the way for long-term care access, regulation, and insurance.
  • Pay care workers (both in institutional and home health settings) a salary with PTO, retirement, and benefits (educational and promotion opportunities).
  • Provide paid family leave for family and friend care workers, so that they can focus on the care work they want to do without worrying about economic self-harm.
  • Ensure enhanced respite care and family mental health support.

Taking care of someone else’s s!#t is hard, labor-intensive work, both physically and mentally, and it must be recognized as such. We can no longer silently accept the gender discrimination inherent in care work. We all must bear the burden and the weight, and take care of each other’s s!#t.

Disclaimers: The title is gendered caregiving, which, for the purposes of this blog, focuses on the traditional gender binary of women and men doing caregiving. While clearly in the minority, men do provide unpaid care work. I afford no special credit for doing this work because one is a man. It is akin to saying, “my husband is babysitting the kids”—um, no they are doing the hard work of parenting. My goal is to highlight the burden of care work that is performed primarily by women. Women do not get gold stars for work that they have historically been expected to do.

The author acknowledges her own lifelong role as a caregiver. I do not aim to speak to every person’s experience with doing this work. Instead, I seek to highlight that the continued gender inequity and unpaid labor of care work harms women. If we are to be a just society, it is imperative for us to take care of the caregivers.

Karen Kelly-Blake photoKaren Kelly-Blake, PhD, is an Associate Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Medicine in the Michigan State University College of Human Medicine.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 30, 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. Kelly-Blake: The Burden of Serving: Who Benefits?; Patient dumping: why are patients disposable?Incarcerated AND Sick: At Risk for Pain, Injury, and DeathWhite Horse, White Faces: The Decriminalization of Heroin AddictionRacism and the Public’s Health: Whose Lives Matter?Concussion in the NFL: A Case for Shared Decision-Making?

Click through to view references

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

Bioethics in the News logo

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.

Click through to view references

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

Listen to this story:

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

vaccination-5100347_1280
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

49896864357_71c38ad380_k
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

Click through to view references

The Promises and Perils of Using Collective Data to Monitor COVID-19

Listen to this story:

This post is a part of our Bioethics in the News seriesBioethics-in-the-News-logo

By Laura Cabrera, PhD

In a state of public health emergency, such as the one brought on by COVID-19, different countries have invoked extra powers to help mitigate the public health threat. These special powers would under normal circumstances be considered infringements on our liberty and privacy. A recent Wired article addressed that big tech companies like Google and Facebook are having discussions with the White House to share collective data on people’s movement during the current pandemic. For example, using phone location data or private social media posts to help track whether people are remaining at home and keeping a safe distance to stem the outbreak, and to measure the effectiveness of calls for social distancing. In the U.S., the government would generally need to obtain a user’s permission or a court order to acquire that type of user data from Google and Facebook. But as mentioned above, the government has broader powers in an emergency.

Obtaining this data could help governments prepare for the coming weeks of this public health emergency. For example, smart phone location data analysis from the New York Times has shed light on the disparities regarding which groups can afford to stay home limiting their exposure to the coronavirus. This is certainly useful to better understand the spread of the disease in different areas and across different socioeconomic groups. Facebook is working with Chapman University and other collaborators to develop maps that show how people are moving between areas that are hotspots of COVID-19 cases and areas that are not, and such maps could be useful in understanding the spread of the disease. Announced in a news release this month, Apple and Google have launched a joint effort to help governments and health agencies reduce the spread of the virus by using application programming interfaces and operating system-level technology to assist in enabling “contact tracing.”

brain-magnifying-glass
Image description: an illustrated image of a pink brain coming out of the top of a person’s head; a magnifying glass with a brown handle, silver rim, and blue lens is above the brain as if looking into it.  The background is light green. Image source: artwork from vecteezy.com.

While this sounds promising, one of the main obstacles has to do with concerns over the privacy of users whose data might be handed over by the companies. It would be unprecedented for the government to openly mine user movement data on this scale. To add to the issue, the current state of affairs where many more people now rely on digital tools to work or attend classes remotely, as well as to stay connected with family and friends, makes the amount and type of data gathered richer. However, as pointed out in a New York Times editorial, we should not sacrifice our privacy as a result of this pandemic.

Another relevant concern related to the use of collective data is government surveillance. For example, the use of mobile data to track the movement of individual coronavirus patients in China or South Korea can be seen as more controversial uses of the collected data.

It is certain that during this challenging time, data sharing and collaboration between academia, governments, civil society and the private sector is key to monitor, understand and help mitigate this pandemic. However, without rules for how companies should anonymize the data, and without clear limits on the type of data they can collect and how the data could be used and kept secure by researchers and governments, the perils might be greater than the promises. Furthermore, we need a clear path for what happens after all of this is over. For example, people should be given the option to delete user profiles they created as part of new work and school arrangements.

Given past scandals around privacy and transparency surrounding these big tech companies (in addition to the several scandals with the current government administration), it is hard to trust that the idea would be to only gather aggregate trends, and that they would not collect any identifying information about users, or track people over long periods beyond the scope of the pandemic.

Civil groups and academics have discussed the need to protect civil liberties and public trust, arguing for the need to identify best practices to maintain responsible data collection, processing, and use at a global scale.

The following are some of the key ideas that have been discussed:

  • In a public health emergency like the one we are living, some privacy intrusions might be warranted, but they need to be proportionate. For example, it would not be proportionate to gather 10 years of travel history of all individuals for the type of two-week incubation disease we are dealing with.
  • This type of government and big tech company partnership needs to have a clear expiration date, as there is a hazard for improper surveillance that could come with continuation of data gathering after the crisis is over. Given the historical precedents on how life-saving programs used in a state of emergency have continued after the state of emergency was resolved, we as a society need to be very cautious with how to ensure that such extraordinary measures do not become permanent fixtures in the landscape of government intrusions into daily life.
  • The collection of data should be based on science, and without bias based on nationality, ethnicity, religion, or race (unlike bias present in other government containment efforts of the past).
  • There is a need to be transparent with the public about any government use of “big tech data” and provide detailed information on items such as the information being gathered, the retention period, tools used, and the ways in which these guide public health decisions.
  • Finally, if the government seeks to limit a person’s rights based on the data gathered, the person should have the opportunity to challenge those conclusions and limits.

A few weeks ago the European Data Protection Board issued a statement on the importance of protecting personal data when used in the fight against COVID-19. The statement highlighted specific articles in the General Data Protection Regulation legislation. For example, Article 9 mentions that processing of personal data “for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health” is allowed, provided such processing is proportionate to the aims pursued. In the U.S. we are far from having such a framework to start discussing data collection, sharing, and use under the current circumstances.

There is no doubt as to potential public health benefits associated with analysis of such data and surveillance. For example, the utility of identifying individuals who have traveled to hotspot areas, or tracing and isolating contacts of those infected. However, without a clear framework on how digital data collection companies will address privacy and surveillance concerns, the more cautious we should be about access to other areas of our life, access that would also be shared with governments. Without due caution, not only will public trust continue to be undermined, but additionally people will be less likely to follow public health advice or recommendations, leading to even worse public health consequences.

Laura Cabrera photoLaura Cabrera, PhD, is an Assistant Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Translational Neuroscience 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 7, 2020. With your participation, we hope to create discussions rich with insights from diverse perspectives.

Article narration by Liz McDaniel, Communications Assistant, Center for Ethics.

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. Cabrera: Should we trust giant tech companies and entrepreneurs with reading our brains?; Should we improve our memory with direct brain stimulation?Can brain scans spot criminal intent?Forgetting about fear: A neuroethics perspective

Click through to view references

A Reasonable and Virtuous Response to a Pandemic

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

By Larissa Fluegel, MD, MHS

Within five days of the first two registered cases here in Michigan, social media traffic about COVID-19 visibly ramped up, with a significant amount of COVID-19-related posts on my news feeds. This was the same for my friends. People were posting photos of entire local store aisles almost empty. I went to the store and to my astonishment, checkout lanes had long lines of individuals with carts filled with toilet paper, water, and hand sanitizer. Every single cart looked the same. I thought, what is happening? The apocalypse? Where have the virtues of altruism and selflessness gone? Anyway, this blog is not about toilet paper or human responses to fear, but about the question of what is safe, appropriate, and virtuous to do at the individual level, all things considered.

no-toilet-paper-flickr-raed-mansour
Image description: Empty shelves that normally contain toilet paper in a Walgreens store, shared on March 13, 2020. Image source: Raed Mansour/Flickr Creative Commons.

What we know.

  • This is a new virus. The fact that it is new means that humans lack the immunity to mount a quick and sufficiently strong response to clear the virus before it causes disease.
  • Based on all 72,314 cases in the Chinese population, most (80.9%) are ‘mild’ respiratory flu-like (but also gastrointestinal); 4.7% turn critical and 2% are fatal.
  • Severity and risk of death increase with age and with pre-existing conditions.
  • There is a two to fourteen-day incubation time (this is the period of time from when the virus first enters one’s body and the time one shows symptoms).
  • Mild soap and water used as recommended are highly effective in eliminating the virus.
  • There is no effective treatment or vaccine against the virus yet.
  • Michigan’s Governor declared a state of emergency on March 10 and mandated all Michiganders to stay home as of March 23. This state of emergency declaration is not intended to cause panic, but instead is to allow the State to quickly deploy resources to support local responses in combatting the spread. This also is done to avoid overwhelming the healthcare system, where patients are being treated in hospital hallways, cared for by exhausted healthcare workers who might be pressed to decide which patients warrant oxygen assistance and which die.

Why do we want to stop the spread?

What we really hope to achieve is to flatten the curve of the spread. The goal is to decrease the rate of infection so that too many people don’t get sick at the same time, going beyond our current health care system’s capacity to safely and effectively treat. By doing so, we protect our fellow citizens. How? By preserving access to necessary medical resources.

What do these things mean to us?

We should understand that eventually we might all get sick. We must not make decisions based on fear. We instead should make decisions based on what we know about the virus and its spread, i.e., the facts and recommendations from reputable health authorities like the World Health Organization (WHO) and the Centers for Disease Control and Prevention (CDC) who are carefully monitoring and studying the situation, while avoiding unsupported advice appearing on social media. This is ethical, responsible, and virtuous behavior.

When public health officials strongly recommend that we stay home, we follow their recommendations to the best of our ability because this helps save lives. Remember the issue is no longer about us individually but about us as a community and a nation:

“…[T]o prevent the state’s health care system from being overwhelmed, to allow time for the production of critical test kits, ventilators, and personal protective equipment, and to avoid needless deaths, it is reasonable and necessary to direct residents to remain at home or in their place of residence to the maximum extent feasible.” -The Office of Governor Gretchen Whitmer, Executive Order 2020-21 (COVID-19)

When public health officials strongly recommend that we immediately practice appropriate social distancing, we do that. What this means is that whenever we are able to do so, we should anticipate and avoid places where we cannot be at least 6 feet from another person—except, of course, family members who we live with. If you work in an industry that requires you to show up, do not fret. If the rest of us altruistically do what we can, you should also be okay. If you have a friend or relative who may be at increased risk because of a prior condition, stay away from them—again, let us take care of each other.

But be mindful that social distancing does not mean social isolation. We can and should stay connected through technology that enables us to reach out and connect. This is also good for our emotional and mental health.

Of course, we must not forget to practice respiratory and hand washing etiquette, washing our hands the right way, with soap and running water, when:

  1. You arrive at your location (if leaving home is necessary) and when you return home.
  2. Before and after handling food.
  3. After toileting.

None of these cautions and behavioral virtues suggest that it is necessary to freak out and purchase all the available toilet paper or hand sanitizer. All indications are that food and basic necessities will continue to be available. It does not mean to be obsessively and compulsively spraying disinfectant on every surface of your home multiple times a day, every day. If we practice social distancing or stay home where mandated and practice appropriate hand washing and respiratory etiquette, this is not necessary.

Times like this call for bolstering virtuous behavior. Do what we are told for the sake of all. Do what we can to reconnect with our families and our local community. Do remember those in need. We can go out for a walk or a run or a hike. With appropriate distance these are all okay.

The bottom line is that it is appropriate and virtuous to calmly and sensibly take measures to slow the spread, following guidelines from valid sources while taking care of each other… keeping our distance but keeping in touch.

fluegel-larissa-blogLarissa Fluegel, MD, MHS, is an Adjunct Assistant Professor with the Center for Ethics and Humanities in the Life Sciences and the College of Human Medicine at Michigan State University where she teaches bioethics and the social context of clinical decisions. Her academic interests include the integration of bioethics, social determinants of health, shared decision-making, and health policy into medical education.

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

Click through to view references

Trust and Transparency in Quarantine

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

By Parker Crutchfield, PhD

As of February 11, more than 1,000 people have died from the novel coronavirus, the vast majority of them in China. As the virus spreads, China has been implementing the largest quarantine in human history. The virus has spread beyond the borders of China, and has been observed in at least twenty-four countries. There is no way of knowing how effective the quarantine has been. It obviously didn’t prevent the virus’s spread, though it’s likely fewer people are infected because of it. Part of the reason that the quarantine has not worked to prevent the spread is that many in China evidently don’t trust those implementing the quarantine. About five million people left Wuhan before the quarantine locked down the city. And the images in this video are certainly not of a family trusting their government.

Trust and quarantine
A prominent account of what makes public health interventions permissible implies that public trust is necessary for public health interventions to be morally permissible. As a general rule, this is false. Public trust in Flint has been totally undermined. But in that city, public health interventions on the water supply are not only permissible, they are obligatory. So, it’s not true that trust is necessary. But that is not to say that public trust isn’t critical to the value of a public health intervention.

Trust and mistrust street signs image
Image description: two green street signs with white lettering, one reads “trust” with an arrow pointing to the right, the other reads “mistrust” with an arrow pointing to the left. Image source: Pixabay.

The value of a public health intervention, and its moral authority, is primarily a matter of the value of the benefit it achieves (the value of the cases prevented) minus the disvalue of the burdens it requires people to bear (the disvalue of social isolation). Trust may not be necessary, but it certainly impacts the benefits and burdens of a public health intervention. There is significant benefit in not having five million people evade a quarantine because they mistrust those implementing it. Who is more burdened, the family who fights tooth and nail the officials forcibly removing them from their home, or the family who goes willingly because they trust them? Mistrust creates burdens; trust promotes value. In other words, mistrust encourages people to break quarantine. If the goal is to encourage social isolation and compliance, public trust is key.

Trust and transparency
If trust is so important to the effectiveness of a quarantine, what factors promote trust? That same theory of the morality of public health interventions derives the value of transparency from the claim that transparency promotes trust. The idea is that the more open policy decisions, the more the public will trust them. As before, this is not generally true. Some research indicates that transparency actually undermines trust (De Fine Licht, 2011; Grimmelikhuijsen, 2014).

800px-A_Screen_Display_During_Wuhan_Coronavirus_Outbreak
Image description: A screen display on the side of a building showing “early discovery, early report, early quarantine, early diagnosis, early treatment” during the Wuhan coronavirus outbreak in Hefei, Anhui, China. Image source: Zhou Guanhuai/Wikimedia Commons.

That is, the more people know about policy implementation the less they trust the people implementing it. If accurate, this research suggests instead that if we want people to trust public health policies, information should be withheld from them. This is in line with earlier research that suggests what people really want is for decision-makers to be empathetic and non-self-interested and that, if they are, for them to make mostly non-transparent decisions. People may want “stealth democracy” (Hibbing and Theiss-More, 2002).

So, probably it is not generally true that transparency promotes trust. But quarantine might be a special case. When the public already mistrusts those implementing public health policies, it’s not clear that there is any way to rebuild trust other than by being transparent. China was already in a tough spot, after their mishandling of the SARS outbreak in 2003, about which officials withheld information from the public and the global health community. Combined with the attempted silencing of the coronavirus whistleblower and his recent death, officials’ actions set the stage for a mistrustful public and less effective quarantine.

The next outbreak
Given officials’ actions in response to SARS, the public response to attempts to control coronavirus was probably never going to be trusting. Regardless of when the next outbreak occurred, the public was never going to trust the interventions to control it, whatever they happened to be. That was determined in 2003. Transparency now won’t help trust now, and so it won’t help the effectiveness of the present quarantine or any of the other interventions, such as the disinfectant now being sprayed. The damage to the present is done. Sadly, given that officials have responded like they did in 2003, interventions aimed at controlling their next outbreak, whenever that happens to be, will be upon a mistrusting public. When that time comes, if officials choose to quarantine, it seems likely that that quarantine will elicit similar responses: people will evade and resist, grabbing door frames as they are pulled from their homes. The virus will not be contained as well as it could have been, and more people will get sick and die. Present transparency could have promoted future trust, greater compliance, and prevented sickness and death, but that opportunity has come and gone.

There is a lesson for local officials as they try to intervene on the ongoing water crisis in Flint, the PFAS scare in West Michigan, and, in my hometown, the threat of mosquito-borne illness. The lesson is: transparency now purchases trust later. And that trust may prevent suffering and save lives.

parker-crutchfield-cropParker Crutchfield, PhD, is Associate Professor in the Program in Medical Ethics, Humanities, and Law at the Western Michigan University Homer Stryker M.D. School of Medicine, where he teaches medical ethics and provides ethics consultation. His research interests in bioethics include the epistemology of bioethics and the ethics of enhancement, gene editing, and research.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, March 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. Crutchfield: Public Health Crisis Warrants Liberty RestrictionsWe Should Tolerate and Regulate Clinical Use of Human Germline Editing

Click through to view references