New York’s Mandate and the Absence of a Religious Exemption

On December 13, 2021, the US Supreme Court denied injunctive relief in Dr. A v. Hochul. This post is meant to summarize the dissent, follow up on an earlier post, and track the arguments. (The Court also held oral arguments in two federal mandate cases on January 7, one of which applies to healthcare workers, Biden v. Missouri.) New York’s booster mandate for healthcare workers also does not include a religious exemption.

This is the same graphic used in a previous post:

As noted, I have no skin in the game, but I do sense that the political consequences of requiring vaccines without religious exemptions would be noteworthy and would benefit the most far-right American rights enthusiasts. I am hugely in favor of some reasonable religious exemptions, yet I also like the application and logical reasoning of Employment Division v. Smith because I firmly believe the religious should not be entitled to a pass on the many responsibilities required by membership in society. To clarify, I like the Smith holding that laws that are neutral and generally applicable should not face strict scrutiny, but I see a likelihood that Smith will be narrowed and eventually overruled. I also think accommodating the religious when it makes sense to do so should be a priority and is a foundational concept in US democracy. The pandemic, however, poses special risks to accommodating religious exemptions to public health laws.

Anne Zimmerman CC-BY-NC Not to be Construed as Legal Advice

What You Say Can Be Used Against You

The quite predictable 14-page Justice Neil Gorsuch dissent highlights the governor’s language concerning the vaccine mandate and encouraging those refusing vaccination for religious reasons to get the vaccine. I cringe a bit when the bioethics community (much like Governor Hochul) suggests that one is not properly following one’s own religious leaders or doctrine. I find that beside the point and an attempt to assign rationality to something not steeped in logic. The constitutional arguments, especially considering so much developing caselaw, do not turn on how logical the religion is or on whether a believer follows a religion in the way in which religious leaders intend.

Gorsuch aptly points out that Governor Hochul was aware that people would likely refuse vaccination for religious reasons, and she sought to reframe their religions as pro-vaccination. As predicted, much of the discussion and messaging in the bioethics and public health community opened the possibility that those challenging the New York healthcare worker vaccination mandate would argue that the law mandating vaccination and excluding a religious exemption was designed partly or wholly to coerce the religious. That is, it seems quite possible to conclude that the unvaccinated might be primarily those whose religious beliefs prohibit vaccination and that lawmakers were aware of that. Whether the law targets the religious purposely would be a question of fact.

Another Round of the Effects Argument

Gorsuch also restated his own position from Does v. Mills: he asserts that the effects of being noncompliant (unvaccinated) would be the same whether one is unvaccinated for a medical or a religious reason. He cites Fulton v. Philadelphia and Does v. Maine. Two older cases that address whether the existence of a medical exemption is a catalyst for requiring a religious exemption concern a requirement to be clean-shaven in prison. One court held that if there is a medical exemption there must also be a religious one  (Fraternal Order of Police v. Newark, 170 F. 3d 359 (3d Cir. 1999)) and another court held not so (Hines v. South Carolina Department of Corrections, 148 F. 3d 353 (4th Cir. 1998)). The cases differed only in that in one case the rule’s goal was complete uniformity, a goal undermined in the same way by medical and religious exemptions (FOP v. Newark), and in the other, case, the goal was discipline and safety (Hines) and the law was constitutional as neutral under Smith.

To me, the Gorsuch focus on the effects of the exemption should be rebuked by the argument that a medical exemption has a different purpose and that eliminating it would require asking some people to take a risk that is both larger and of a different type than the general population while the religious would be asked to take the same risk as the general population. The clean-shaven requirements did not pose a different risk profile — those cases do not apply well to vaccination mandates. Even without strict scrutiny, the law without a religious exemption could still be held unconstitutional. Gorsuch did note quite high vaccination rates among New York healthcare facilities (90 to 96 percent) but he did not address the possibility that certain facilities have lower healthcare worker vaccination rates. Nonetheless, a law with a medical exemption that is more specific and lists criteria would be more likely to stand. Individualized exemptions are more vulnerable to the reasoning that a religious exemption must be considered with all other exemptions. (For example, see Rader v. Johnston, 924 F. Supp. 1540 (D. Neb. 1996).)

I find the Gorsuch logic to be akin to saying that people going out unmasked knowing they are COVID-positive is no different from going out unmasked and unknowingly COVID-positive. Both people would pose the same risk to society, yet no one would argue that both instances are the same or equally morally permissible. While that is not a religious circumstance (although it could be adapted to be one) it is a comparable scenario in which the same action is morally different despite having the same effect. Requiring a religious person with no special physical risk to be vaccinated is morally different from mandating that a person at a high medical risk (e.g., severely allergic to the vaccine) be vaccinated. The reason for the exemption is the key difference and should not be disregarded in the analysis.

A “Numbers Game”

Gorsuch addresses the argument that a religious exemption could lead to many more unvaccinated people, saying it is not “a numbers game” and that the adoption or absence of religious exemptions should not turn on numbers. Yet he does suggest that if the court is to consider the numbers at all, they would do so only in a strict scrutiny analysis. I would assume that in the pandemic, numbers are highly relevant. Vaccination usually is a numbers game quite rightly. One of many secondary reasons we do not allow religious exemptions from paying taxes (for example, if someone refuses because they feel the money might support a war) is arguably that people would opt out of something fundamentally important to society and that if all religious people were to do so, the tax base would suffer more.

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Gorsuch’s strength is likely that a tight causal connection to an important goal may be difficult to establish and his acknowledgement that religion is not expected to be logical. Religion can seem “strange and bewildering”. Religious exemptions to similar laws in other states exist. To me the biggest weaknesses in the Gorsuch dissent are his continuing to emphasize the sameness of the effect of remaining unvaccinated while dismissing the relevant practical and ethical distinctions. His attempt to make the numbers irrelevant is also a stretch. He even suggests that if the numbers of those seeking exemptions were large that denying some medical and some religious exemptions would be appropriate. It most certainly would not!

For additional background please see Zimmerman, A. “Religious Exemptions: Application of Employment Division V. Smith to COVID-19 Vaccination Mandates”. 2021. Voices in Bioethics, vol. 7, Nov. 2021, doi:10.52214/vib.v7i.8814.

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This post is not intended to provide legal advice. Reading or disseminating it does not create an attorney-client relationship. This website is not intended as legal or medical advice.

Brain Activity & Thoughts: Should Neuro-Rights Look Beyond the Individual?

Neuro-rights may protect people from certain harms due to neurotech advances. Neurotech has potential to improve medical treatments and revolutionize care, but there are foreseeable risks. Marcello Ienca defines neuro-rights “as the ethical, legal, social, or natural principles of freedom or entitlement related to a person’s cerebral and mental domain; that is, the fundamental normative rules for the protection and preservation of the human brain and mind.” Importantly, technological advances that use implants or devices could be subject to evaluation using some common bioethics, privacy legal, and responsible tech principles and terminology. New tech could harm people by infringing an already existing right or a right that one would reasonably expect to have even if neither codified nor overtly recognized in the neuro arena. There is debate over whether new laws are needed as current privacy rights likely protect people’s mental and cognitive privacy and liberty to some degree.

Examples of neurotech devices and the conditions they might treat are devices to enable people who are paralyzed to move their limbs by thinking commands, to allow a colorblind person to experience seeing color using sound waves, to alleviate symptoms of drug addiction by changing the dopamine in the brain, or to read and put text to thoughts for those who cannot speak. Beyond medicine, neurotech has commercial, enhancement, and military uses. There are also movements to use technology to enhance through self-experimentation and biohacking that operate outside of the traditional medical landscape. Risks arise from the possible physical harm, the potential for largescale data collection, and the power to alter society.

A Developing Field of Ethics and Law

Neuro-rights as a body of scholarship is in its infancy. The suggested rights tend to stem from well-recognized rights and ethical considerations like liberty (to have thoughts, beliefs, etc.), dignity, privacy, control or agency (including free will and autonomy), integrity, fairness in access to new technologies, and freedom from built-in bias. (The bills passed in Chile “include the rights to personal identity, free will, mental privacy, equal access to cognitive enhancement technologies, and protection against algorithmic bias.”)  Yuste, et al., list proposed neuro-rights including “(1) the right to identity, or the ability to control both one’s physical and mental integrity; (2) the right to agency, or the freedom of thought and free will to choose one’s own actions; (3) the right to mental privacy, or the ability to keep thoughts protected against disclosure; (4) the right to fair access to mental augmentation, or the ability to ensure that the benefits of improvements to sensory and mental capacity through neurotechnology are distributed justly in the population; and (5) the right to protection from algorithmic bias, or the ability to ensure that technologies do not insert prejudices.” These principles do not include harm prevention explicitly.

In the AI ethics arena algorithmic bias is well recognized. Access to care varies among countries with the likelihood that some countries prefer entirely tax-supported health care while other countries have limited coverage, private insurers, and may be less likely to ensure equal access especially when technologies are new and are not the standard of care.

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Privacy, integrity, and liberty may be reshaped as mental privacy, integrity of thoughts and agency over how thoughts are transcribed and conveyed, and cognitive liberty, but they stem from familiar terms with extensive bodies of work supporting their virtue and application.

Whose Rights? Other Individuals and Society May Need Protections

I would argue that the rights-based framework could overlook the broader issues of freedom and the degree to which one person’s freedom might impact another person or society. That is, the rights of the person doing the neuroactivity are the subject of proposed laws and resolutions, but the rights of the people who do not wish to go along are not as well protected. A changing tide that brings a new social norm carries some dangers that may not be addressed in a rights-based framework that fails to account for the rights of others in society, or the circumstances when different parties’ rights conflict. (For example, if I have the right to improve my vision in an extreme way that sees through distant windows, then you no longer can exercise your right to privacy, or it becomes more difficult for you to do so. In enhancement, from intellect to strength, bioethicists similarly recognize that those who wish to go about their business as usual may have no right to a non-enhanced peer group or populace.) The choice to participate or to opt of modern technology will likely become difficult, and eventually may not seem like a choice if certain neurotech that is more likely to alter society by setting a new standard is widespread. When seen in the context of the debate between transhumanists and bioconservatives, or from the realistic center position that much of technology and medicine lies in between treatment and enhancement, neurotech will require an analysis of what makes human beings special, unique, and valued, and how changing that calculus could impact society. Emotions like compassion, empathy, and pity, and the impetus to help the downtrodden may decrease as more people see cognitive, physical, and mental states as a choice rather than a result of genetics, effort, and environment. The rights-based considerations may protect individuals but ignore the implications for global society.

The use of neurotech for enhancement is part of the biohacking and cyborg movement which evades the requirement of IRB approval for neurotech experimentation. Furthermore, neurotech could eventually become a norm by which tasks are accomplished. For example, if I think I want the subway turnstile to unlock, will it unlock and know whose account to charge, but what will that mean for someone who wishes tokens were still needed?

Informed consent is unlikely to protect people in the way they may wish. For now, neurotech devices require an implant, making consent to the device and a certain amount of data collection a reasonable part of the initial process. I would argue, as I often argue about informed consent’s inadequacy in the big data setting, informed consent will be inadequate to protect people once excess information is collected, stored, subject to possible breaches, malware, or inappropriate uses. Informed consent does not address societal vulnerabilities. Technology that can translate, record, or map thoughts would “mark a radical departure from conventional accounts of one’s mind as accessible only to oneself.”

Other laws would need to address some of the new problems of neurological and cognitive data, recorded thoughts, and thought patterns. Collection and use limitation principles should apply. Taking a different angle like making the data derived un-subpoena-able or inadmissible in court could ensure fairness in countries that value constitutional and human rights and require prosecutors to prove a case using well-established rules of evidence, but such legal measures would not help in countries where individual liberties, a right to a fair trial, and a prohibition on unreasonable searches and seizures do not exist. While it is unlikely, especially in the US where free speech rights have gone corporate, advertising laws could prohibit the use of certain data for targeted advertising.

neurotech, neuro-rights
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The jump from wearables to implants is arguably small. Neurostimulator implants for epilepsy already record data. Cognitive data is collected many ways—test scores and implants may divulge similar personal data. To the extent that medical uses of implants that stimulate the brain lead to collection of data that is similar to that already collected other ways, rules in place likely already govern the privacy space. Addressing their insufficiency might require laws in other arenas or data collection and use prohibitions in privacy laws. Yet researchers advocate for more accessible deidentified or anonymized data, arguing that promoting scientific discovery outweighs privacy concerns.

Neurotech’s data could lead to an intrusion on privacy that is both of a different type and degree. A new element of privacy for technology that reads and records thoughts, “mental privacy” (as protected by Chile’s new constitutional amendment), will likely be limited to instances where there is a reasonable expectation of privacy. Thoughts are predictable and may be estimated from pictures that show facial expression and private thoughts may corroborate thoughts willingly posted or stated in public or on social media. People may also agree to share neurotech data for the sake of using it for day-to-day activities. For example, if thinking is way to change the television channel, then a corporate entity will likely abscond with the thoughts as part of the use pact (I know the words television and channel are likely to be outdated any minute…).

neurotech, neuro-rights
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Collection limitation, use limitation, proportionality, harm prevention, the ability to access and fix information (possibly even correct data used out of context) are important considerations. Many data laws promote ease of cross-border data transfer or facilitate medical research rather than having privacy as the singular goal. Something as personal as a thought deserves significantly more privacy protection. Use prohibitions would do more for privacy than informed consent as data uses may prove dangerous in unexpected ways. For example, foreign bad actors could hack stored data revealing thoughts, impulses, and cognitive abilities of populations. The many sector-specific US privacy laws and state laws may already cover some neurotech data and it is difficult to see whether more sector-based privacy laws would add much other than confusion.

Privacy law and policy becomes increasingly less important as people willingly divulge data undermining the confidential aspect of privacy. The biggest privacy issue is protection from surveillance, bad actors, and discrimination which can be achieved by looking to other bodies of law like criminal law and civil rights.

Unethical Uses

The use of neurotech to exert control over another person against that person’s will seems far-fetched but there are many criminal justice and military scenarios where the temptation to force truth-telling is so strong that a neuro-device might be considered. The UN Declaration on the Protection of All Persons from Being Subjected to Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment would not seem to apply definitively as implanting a device, if anything, could be argued to make physical torture obsolete. The US narrowed its take on what actions comprise torture during the “war on terror” and its privacy frameworks would be unlikely to protect military prisoners’ thoughts without special statutory provisions.

Data-generating patents will also be problematic as neurotech, in ways similar to bodywear tech and biological data collection devices, may include a wealth of data that gives certain corporate actors an advantage over their competition (like the owners of data-generating patents for BRCA genetic detection had and combined with trade secret laws led to a chokehold over the particular data market).

Treatment or Enhancement: Will Use Matter?

The ethical justifications and considerations surrounding neurotech advances that bring people to a physical or mental norm should vary from those used for enhancement. The role of this distinction is unclear in the brand new vernacular of neuro-rights — neuro-rights may extend the transhumanism school of thought and encourage biohacking or non-IRB or non-FDA approved implants. There are people who describe themselves as “cyborgs” having engaged in neurotech usually for enhancement, and often performed by biohackers as opposed to IRB approved researchers or doctors. Looking at which uses are within the traditional ethos of medicine requires absorbing and understanding the ethics driving the multitude of views on the goals and limitations of medicine. We may consider neurotech discoveries science, but not necessarily medicine, making the intersection of tech ethics and medical ethics the best combined starting point. There already is a widespread ethics debate over genetic alterations and enhancement with a body of ethics literature applicable to modern technologies. And tech ethics already speaks to complex issues like robotics and the future of work.

The Big Picture

In addition to the neuro-rights framework, and its effort to shore up individual rights, it may be imperative to turn our attention to societal issues. If neurotech has a solution for Alzheimer’s but its use can be controlled before it is used to enhance almost everyone’s memory, or it can allow those with paralysis to move about without tempting those already fast to use the tech to become Olympic-caliber, a rights-based, privacy, and agency model does not offer society a say in rapid change, and may presume acceptance. But if rapid societal change continues, an ethics analysis would do well to consider the role of neurotech in society, its potential for good and bad, and it must go beyond the privacy issue by envisioning the use of thought and neuro signals as a method of participation in common daily actions, as cell phones arguably are now. Laws that prevent surveillance and impose collection and use limitations would protect society while recognizing autonomy and the power to participate as well as opt out of approved, well-considered neurotech implants.

Encouraging and incentivizing research and development of neurotech that is within the ethos of medicine is a worthy priority that may lead to a beneficial period of rapid change and provide a roadmap for resolving complex medical problems.


Thoughts & Questions

If drugs and technologies vie for sales in the neurocognitive arena, would US pharmaceutical companies lobby against devices to protect their market share? There is an inherent, noteworthy competition between tech and pharmaceuticals.

Eavesdropping laws like the Wiretap Act could expand beyond the “oral” to include thoughts and cognitive data that is not expressed orally.

Can the processes embedded in deliberative democracy allow for referendums or other public participation in the approval of neurotech for uses beyond medical treatment? The group in favor of keeping the status quo would not have rights under the neuro-rights framework. (Anti-progress is not really a right…)

If privacy’s two-pronged nature breaks apart, will protection from government (and corporate) intrusion be possible without confidentiality?

Neuro-rights leads to the separate categorization of data that is derived from thoughts and brain activity, but the data could be viewed as any other personal data, subject to existing frameworks and laws.

Similarly, protection from bodily intrusion should protect people from neuro-intrusion, or the wrongful use of neurotech to brainwash, shape thinking, or alter neuro-activity. (For example, if there is a cure for addiction, it is unlikely that it could be imposed against someone’s will.)

While arguably controversial, presuming data is owned by the data subject is a better starting point for all personal data and would promote fairness, compensation, and autonomy. Data ownership and control are increasingly important as data is so available and often changes hands without the knowledge or consent of the data subject.

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Authenticity in Bioethics: Saying It in Your Own Words and Phrases

In the bioethics realm, there are a pre-set language, basket of concerns, and principles to sort through ethical dilemmas. But generally, people are more authentic when they express themselves in their own terms. This post explores whether the chosen language is setting artificial parameters in bioethics. The four principles and the most noted concerns like scarce resources, access to care, or algorithmic bias may disguise other important concerns and lead to predictable lapses that are detrimental to public health and society. The process by which professional associations, higher education, and self-selected social groupings devise special languages, frameworks, and strategies for analysis may validate beliefs and funnel people toward the same set of concerns and solutions.

When I was a bioethics student, one professor really liked to use polls in the class. The use of binary polling questions was a challenge for me. I cannot commit to a yes or no when something is phrased with all the weight of someone else’s language, framework, and priorities. My answer was always “it depends”, which was not a choice on the official poll. “It depends” recognizes the variables not mentioned, the big picture, the “what will this mean to society or public trust?”, the details that were not provided in the hypothetical, the digging not yet done. And “it depends” speaks to the wording. Maybe I sort of agree, but I would never have phrased it that way. People want to be authentic, or true to their values or priorities. To me, that is easier when I choose the words. Authentic language has a substantive impact. But there is sometimes a need to speak the language of an industry or audience. Relatability while maintaining voice is helpful in conveying a humble message and engaging in the process of figuring things out.

authentic words authenticity
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Terminology Might Quiet Feelings

When applying the four principles, beneficence and autonomy would duke it out for determining decision-making authority. A task-oriented way to test the sincerity of an argument may include putting it in your own words. The ability to see through jargon and use words authentically may prioritize overlooked problems. As an example of an issue overlooked in the ideascape, I recently wrote about the impact of negative parental experiences seeking or refusing care for children on public trust in medicine or public health. If I discuss the parent as a decision maker in terms of autonomy and the doctor as wanting what is good for the child in terms of beneficence, the substantive analysis would fit the typical bioethics narrative. But beneficence is not a common or comfortable word, and by monopolizing good, the word positions its challengers as bad.

Sometimes, there is a “hey-wait-a-minute” moment where an awakening occurs and leads to questioning the status quo. Often anything from political affiliation to validation within one’s own professional associations limits creative thinking. For example, describing how a clinical ethics committee operates, some authors use “arms-length” as a tribute almost—as if to say, “It is nothing personal. We are just going to make life’s fundamental decisions for you.” Because arms-length was an accepted term in bioethics and deemed a way to be fair and treat like situations in like ways, people engaging in arms-length bioethics felt validated professionally. But their focus undermined the personalness, the humanness of the effect on a family or individual seeking care. To me, arms-length bioethics is not a common-sense approach, but professional validation made it seem so to others. A movement toward a more person-centered approach is now well under way. (I say “person-centered” a lot and I am not sure of the authenticity of that phrase or whether I am also just using the buzzwords.)

In bioethics we may be answering the so—the why is the thing a pressing issue—and we could overlook the issues if the bioethics language or public health messaging has outlined the concerns. For example, to me, the public health failure to loudly project information about the relationship between obesity and COVID-19 severity and death with any sense of urgency is an ethical lapse. For me, authenticity calls for continuing to highlight the lapse, (to say hey, is this something we should still worry about?), while public health messaging used the limited language of “emergency” to imply that the long-term health issues were not to be prioritized.

To some degree, transparency is folded into informed consent, where it has a role in clinical or research ethics. But unleashed from principlism or the four-quadrant approach, transparency alone is a more obvious concern. In plain language, people want to know the facts, the statistics, and the risks. When public health filters the information, it can feel inauthentic, as though an official decided which story to promote. Authenticity is a reason for having a neutral, objective media. In turn, public trust in the public health apparatus depends on transparency.

The Language of . . .

Adding scientific jargon to ethics—hosting an “ethics lab”—or using STEM language might detract from how we discuss feelings and impact. Ethics talk is not particularly conducive to simplification.

authentic words authenticity
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The phrase “allocation of scarce resources” creates a bioethics area of concentration with many possible criteria like first-come, first-served, in-depth analysis of dependents or profession, potential quality life years remaining, or age. Quality-Adjusted Life Years (QALY) seeks to make a formula of something that in plain language would have unlimited factors and nuance. Resource allocation will never be a winning strategy as someone will always be told there is not enough for them. A group or individual will be left behind. Resource scarcity is a serious issue, but “scarce resources” as a buzz-phrase in bioethics places scarcity as a given (a premise, the cause of the need to allocate) rather than a result of a different problem.

Many industries and people see resource availability as a problem of organization and production. During the pandemic, on the ground, many hospitals were scrappy, dealing in the moment, for example, using a  single ventilator for multiple people. Putting a tube to two patients is far superior to a group in a conference on Zoom making judgments about whose life is worth more. Common-sense solutions have ethical value — they can cut the ethical conundrum short by solving the problem.

The language of resource allocation can be incongruent with the language of business analyses of increased production, supply and demand, opportunity costs, and incentives. New ESG initiatives may help businesses reach those in need and distribute health-related goods more equitably (ESG originated to evaluate socially conscious investing.) ESG has its own language as well. ESG itself may even sound somewhat disingenuous partly due to the way in which companies are driven to act to please investors. Motives sometimes undermine authenticity.

The term responsible technology could be interpreted as limiting the ethical goals to mere responsibility as opposed to something stronger to characterize technology designed with the greater good in mind. Ethical tech, or responsible tech, sets a minimum. Principles used in evaluating whether a new technology is ethical (fairness, privacy, inclusion, transparency, etc.) might prevent people at the table from noticing the big picture of how the tech could negatively impact humanity. The totality should be a separate principle, perhaps one of total effect, of all things considered.

Sometimes the language of the four principles of bioethics compartmentalizes problems and detracts from analysis of the totality. A new medical technology may be distributed a little unfairly, violate autonomy just a little, be beneficent as to some applications and not others, and slip through a somewhat rigorous compartmentalized ethical analysis. Conversely, labeling a new technology “unjust” because it is not universally accessible, something common where health-related goods are seen as special rather than consumer goods, or where there is a strict single-payer system, can bar access to the new product. (An overemphasis on justice could also be blamed for vaccine allocation rules which led to vaccines sitting around unused before they were made available to the next most worthy group.) Once “justice” is invoked in the context of lack of accessibility to all, anyone prescribing, using, or buying the coveted item may be subject to shaming. Similarly, justice often is the wrong reason for condemning a condemnation-worthy development, like certain enhancements or cloning to produce human beings.

By using the language of privacy and informed consent about data, the language surrounding other potential harms is quieted. Fairness is becoming a stronger principle in technology and is beginning to include financial fairness. Bioethics is increasingly needing to share frameworks with responsible technology, yet both arenas could be more open to big picture issues in natural language rather than checklists of principles. An authenticity check would lead to plain (or complex) language to describe potential benefits and harms. Authentic language may be more interdisciplinary than medical, tech, or bioethics language.

Even use of the passive voice often passes the buck. To be genuine, we need to look at who controls an action. Power identification as a bioethics strategy calls for wording that identifies the actor.

Would my grandmother recognize these words now? As human resources rebrand themselves “talent”, the word loses its meaning. As used properly, the talent had a special talent or above-average skill, i.e., was talented. Talent in the new language of hiring democratizes a workplace and is arguably effective at showing appreciation for the humanness of the employee by acknowledging the person’s special skills even when no particularly special skills are needed for the job. The rebranding of human resources departments as “talent” might reflect an emerging societal preference for collaboration over competition or the market power of the job seeker over the employer.

Medicalized Words

Words like anxiety have become medical diagnoses when they used to have a more mainstream nonmedical meaning. Colloquial use has subtly changed whereby the word anxiety within range of a pediatrician may call for a psych eval. I would be hesitant to use overwhelmed, scattered, or depressed as well. As the meaning of depressed has become more clinical, its non-medical use is dwindling.

Other medicalized words have become overused colloquially—for example, some people might say they have ADD in a flippant way to describe their own scattered behavior when they have not been diagnosed, marginalizing those who do truly have ADD.

Specialization

As noted in a recent post about resilience, specialization can lead to people validating each other’s beliefs and stifle thinking “outside the box”. Sometimes new ways of thinking come with a new vocabulary. The new vocabulary can open a door—for example, new technologies bring with them new words as well as new concerns. Yet a new vocabulary can stifle the use of one’s own terms. Language that ensures authenticity could improve the depth of ethics. Without abandoning other valuable developed frameworks, the authentic use of language may foster common sense and critical thinking.

Free Exercise and Vaccine Mandates: The Least Restrictive Means

Vaccine mandates without religious exemptions (or as enforceable against those claiming free exercise) are in uncertain legal terrain. Nineteen states mandate vaccines for healthcare workers, but vary as to religious exemptions. The medical value of mandates with and without exemptions depends on the number of people who successfully claim exemptions or stall in becoming vaccinated while cases are pending, or choose to leave jobs to avoid mandates. When an exemption can be safely granted, there are pros and cons to doing so. Law and ethics converge in this realm.

There are implications of more broadly recognizing religious exemptions for future emergencies. Two arguments, discussed below, could counter the reasoning taking shape in the area of strict scrutiny and how to define least restrictive means. Those in medicine, public health, and bioethics who express a concern and predict high numbers of religious exemptions may decrease the odds that laws survive free exercise claims by feeding the implication that the true motive for adopting mandates is to get religious people to comply. Yet it is important to democracy that all public health measures that infringe rights be properly justified, and strict scrutiny could heighten public trust.

Furthermore, the recognition that healthcare workers in particular have already sacrificed so much and endured elevated risks prior to the vaccine’s development is understandable, and some empathy toward their stance is morally called for. Caselaw may apply outside the realm of healthcare worker mandates to occupations that do not pose a special risk to others, or occupations that are low-paying and important, like firefighting and trash collection. There is a moral component to the argument that we would rather be saved from a fire and have our trash collected regardless of vaccination status. Those arguments are beyond the science — the best protection for the people in any job is vaccination, but to justify firing people, making them stay home, and suffering the social costs of doing so requires more ethical analysis.

Nothing in this post or on this website is meant to be legal advice.

Background

As I noted in “Religious Exemptions: Application of Employment Division v. Smith to COVID-19 Vaccination Mandates” there seems to be a legal paradigm shift that is elevating the power of people who claim religion as a reason to fail to comply with laws. It is unclear whether Employment Division v. Smith, which does not require religious exemptions from laws that are neutral and generally applicable, will be explicitly overruled, chipped away at, or refined. But it is becoming likely that it will not preclude strict scrutiny in free exercise cases about vaccine mandates.

There are two operational legal mechanisms for public health measures impeding constitutional rights—one is more clearly applicable to emergencies (Jacobson v. Massachusetts, which gives deference to public health authorities); the other arguably applies more commonly to non-emergencies: (analysis of whether the law is neutral and applies generally (Smith), and the strict scrutiny of laws that are not neutral and generally applicable (Sherbert v. Verner)). The Supreme Court and lower courts have intertwined these two bodies of law during COVID-19.

Anne Zimmerman CC-BY-NC Not to be Construed as Legal Advice

Public Health Emergencies & the Law

First, laws that are enacted in the emergency may be evaluated under caselaw that avoids some of the constitutional analysis. While Lindsey Wiley and Stephan Vladeck argue that emergencies suspend the constitution, the prevailing theory is that it is constitutional to infringe on some otherwise enforceable rights during an emergency. Jacobson v. Massachusetts, 1905, is the landmark case allowing vaccine mandates in emergencies. Some Supreme Court justices would analyze free exercise cases using Jacobson. While many lower courts explore both lines of law, the Gorsuch and Kavanaugh concurrences in various cases probably indicate a move by the Court to first amendment caselaw over public health emergency caselaw, Kagan, Sotomayor, and Breyer notwithstanding.

During the pandemic, courts applied strict scrutiny or rational basis tests to the many COVID-19 rules and regulations passed by executive orders and legislatures. Many infringed other rights like the right to interstate travel, or the freedom to collect rent or to open businesses. Lower courts have cited Jacobson to avoid a deep dive into free exercise claims, alleviating the need for judges to assess religious practices and beliefs in the COVID-19 pandemic. Yet some courts (and the Gorsuch and Kavanaugh viewpoints) requires strict scrutiny of laws that arguably burden free exercise, intentionally or not. Lower courts have mixed caselaw on the role of COVID-19 executive orders, regulations, emergency measures, etc.

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Free Exercise Caselaw

a. Smith and Neutral, Generally Applicable, (Maybe Exception-less) Laws

Second, in free exercise of religion cases, the view that laws which are neutral and generally applicable may avoid strict scrutiny (the Smith holding) is vulnerable and changing. Prior to Smith, in Bowen v. Roy (1986), (use of a social security number was a neutral requirement designed to prevent welfare fraud and did not violate the free exercise clause) recognized that a requirement that “indirectly and incidentally calls for a choice” does not require strict scrutiny, a precursor to Smith. In the vaccine sphere, mandates as a condition of participation, employment, or the receipt of benefits could arguably be seen as a choice as well. So far, there are not criminal penalties or fines, an outcome-determinative absence to the Bowen Court.

The movement away from finding laws neutral and generally applicable as per Smith is accomplished through two lines of reasoning. One line of reasoning evidences an unwillingness to find a law neutral: broadening the concept of a peer group for the sake of neutrality. (Justice Kavanaugh, concurring in Roman Catholic Diocese of Brooklyn v. Cuomo; the Court per curiam in Tandon v. Newsom). Both cases see a real stretch to likening church to businesses. By comparing churches to grocery stores, Justice Kavanaugh found that a New York law designating orange and red zones impeded free exercise. Yet were the law viewed more realistically, it called for closing many businesses altogether and gave places of worship a better deal, even in red zones. And, at the time, some church services caused significant COVID-19 transmission.

In Tandon, California was enjoined from enforcing a law limiting gatherings at homes to three households regardless of whether the gathering was religious or secular. The Court declared that a California law that treats “any comparable secular activity more favorably” calls for strict scrutiny. That is not in the spirit of Smith and may eventually be the end of it.

The second style of reasoning that chips away at Smith is the Gorsuch reasoning, expressed in Friday’s dissent in John Does 1-3 v. Mills, a healthcare worker mandate case, that if a law has any exception, it must be subject to strict scrutiny when facing a free exercise challenge – if a medical exception were allowed or legislated, to Gorsuch, to deny a religious exemption would call for strict scrutiny of the law. (See Fulton v. Philadelphia where discretionary individual exceptions prohibit denial of religious exemption.)

b. Old Free Exercise Cases

Strict scrutiny requires a compelling state interest and that the law uses the least restrictive means to achieve it. Sherbert v. Verner (1963) allowed unemployment benefits for a Seventh Day Adventist who refused to work on Saturdays applying strict scrutiny. (See Wisconsin v. Yoder (1972) as well.) Even with strict scrutiny, there are examples of failed free exercise claims against legislation. For example, in U.S. v. Lee (1982) the Court rejected a religious exemption to social security participation. In Bob Jones University v. U.S. (1983), the Court permitted the IRS to revoke tax exempt status as the relevant provisions to which the plaintiff objected were designed to prevent racial discrimination, a compelling state interest.

The Court addresses compelling state interests and legitimate and rational ones, applying varying levels of scrutiny. The new and relevant COVID-19 cases are analyzed in these two articles. Religious Exemptions | Voices in Bioethics (columbia.edu) Weeding Out Disingenuous Emergency Orders | Voices in Bioethics (columbia.edu)

The legal paradigm shift is toward applying strict scrutiny more often to laws that may violate a religious belief, limiting the exception for laws that are neutral and generally applicable under Employment Division v. Smith. It is not (yet) a movement to barring all laws that restrict religious exercises or burden religious beliefs.

COVID-19 Vaccine Mandates

Clearly the vaccine requirements were not designed to hurt the religious, and they really would help them and others collectively. But there are arguments that the mandates became necessary only to address refusals, some (even many) of which are likely religious. These hurt the argument that the laws are neutral. Even absent a finding that a law is generally applicable, a vaccine mandate’s tight causal connection to a solution to the pandemic would have been seen as likely to render it constitutional under regular, old-fashioned, strict scrutiny.

Least Restrictive Means: A Changing View

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But with the current Court, that seems less likely because the emphasis has moved from the compelling state interest (many parties agree that the state interest is compelling as a given) to reorienting the least restrictive means analysis to a need to justify why a religious exemption would be worse (more dangerous) than a secular or medical one. (See Fraternal Order of Police v. Newark, 170 F. 3d 359 (3d Cir. 1999) and the Gorsuch dissent in Does 1-3 v. Mills, which very well could become the majority view.) Below are some arguments addressing that reasoning.

a. Bigger Impact if Many People Achieve Exemptions

One line of arguing in favor of requiring people to vaccinate despite their free exercise claims would assert the collective impact of a potentially bigger bucket of refusals compared to secular or medical refusals would be more detrimental to the state interest. Even so, I find that the bioethics discourse emphasizing the fear of fraudulent religious claims is a bad path as it could be used to indicate that mandates were designed to target those expected to claim religious exemptions. By revealing a possible intent, any chance of applying Smith would end, and it would be more challenging to survive a strict scrutiny analysis. It is also important to note, the people in question in Mills are healthcare workers, not the general public.

(I would caution that something like, “many people are already vaccinated, so the mandate is obviously geared to target the religious” might be a successful line of argument.)

The Gorsuch logic could hold true for all individual excuses–in the general public, any individual refusing for any reason poses no different risk to others. But the additional risk as the numbers grow should matter. If the logic were taken too far, the risk would snowball as more people choose not to be vaccinated, for why not?, if they each only create the same risk to others as someone with a medical exemption. Here, the collection of people prevents herd immunity, so each additional exemption may be more medically costly that the last, as a roadblock to herd immunity (or less costly if herd immunity is achieved). It is difficult to argue each one case does not contribute in a collective way, especially where herd immunity is not reached. (Herd immunity, absence of a public health emergency, and a less or non-transmissible diseases would change the calculus.) In some areas of policy, asking what harm only one person’s exemption would cause may put us on the road to lawlessness.

b. A Different Duty

Another argument against the Gorsuch line of reasoning has to do with ethics and what society asks of people. A medical exemption can occur for many reasons. For example, a doctor may grant an exemption because the vaccine will do nothing for the person based on anticipated poor immune response (indicating such a person would not be providing anything helpful to society by becoming vaccinated) or because of some other danger (an increased likelihood of a severe or deadly allergic reaction). (A law would be more likely to stand if it provided criteria to avoid individualizing exemptions. See Rader v. Johnston). By driving the focus to arguing that people categorically pose the same risk to society or themselves whether the exemption is religious or medical, Gorsuch ignores an important ethical distinction. The risk they would be taking is the huge distinction, not the risk they would be causing. Even in the narrow context of a healthcare worker mandate, the risk to the hospitalized and other workers may be the same, but the risk to oneself is not.

A person seeking a religious exemption is being asked to take the average risk (very low) for the good of society and themselves, while the person seeking a medical exemption would be asked to take either a futile vaccine or an elevated risk of severe or fatal reactions. Futile wastes the vaccine doses. Expected allergies or complications are an important distinction. Ending medical exemptions asks much more of the individual in physical, objective terms. A good Samaritan is protected because of arguably doing more beyond a morally required duty. Asking those in need of medical exemptions to take additional risks, or to be good Samaritans, while asking the religious to fulfill an ordinary obligation is a noteworthy distinction. (There is significant literature and debate on a duty to rescue and what the best moral duty would be.)

Put differently, the general community of healthcare workers is being asked to do one thing, while the healthcare workers who have medical conditions contraindicating vaccination would be being asked to do another thing, take a different risk. Vaccination is not really the same action to both groups. To everyone else, both religious and all others not seeking medical exemptions, the ask is the same.

The counterargument speaks to various points in the analysis. “You are just being asked to do what everyone is being asked to do” speaks to the spirit of accepting neutral laws, yet is relevant even if Smith does not apply. It is the fundamental question of all free exercises–religion may support deviation from a general rule. The idea that the exception is to a general rule makes sense here.

The difference in the risk to society of not participating is not the entirety of a least restrictive means analysis. From the starting point of drafting a mandate, the medical exception is the least restrictive means because without it, there would be an unreasonable risk to individuals with medical predispositions. With it, that risk is lowered. A forward looking approach to the least restrictive means would provide better caselaw than looking at the harm. That is, drafters likely thought, without a medical exemption some predictable bad outcomes would occur. The mandate then included a way to avoid those problems. Seen from one angle, that is the least restrictive.

The gravity of the medical possibilities justifies a medical exemption. It does not justify a religious one. The religious one should need to stand on its own.

c. Both Arguments Together

That ties in the first counterargument, that simply, collectively, having more people unvaccinated, even if each poses a similar risk, will lead to more difficulty reeling in the virus, ending or preventing the harm of the pandemic, keeping others who seek healthcare safe in that process, or decreasing hospitalizations. They are essentially the government interests in mandates. Some reasoning indicates that the absence of a religious exemption itself means the least restrictive means were not used. For most laws, a religious person’s noncompliance for a religious reason would have a result similar to a secular person’s noncompliance for a secular reason. That should not be the only logic applied.

The Big Picture

If even in a pandemic, public health cannot prevail over religious objections, then it is unclear which public health measures that burden religion will be permissible in the future. But it is worth remembering that the mandates can stand (for example, in New York when the Northern District granted a TRO later overturned by the 2nd Circuit, the court did not enjoin the entire mandate) and will be generally enforceable with respect to people not claiming religious exemptions and those whose religious exemptions fail. Religious exemptions are not automatic and can require statements, paperwork, or attestations, and many people might not follow through with them.

The value of religious exemptions in free society is immense, but so is the idea that we must comply with a set of laws enacted by elected officials. A balanced approach is necessary. The chipping away at a valuable case that levels the playing field between the religious and nonreligious is underway. Exemptions might pose a danger in some communities. Herd immunity (an elusive percentage with a changing virus) may be possible with religious exemptions intact in many areas, so a fear of (possibly fraudulent) exemptions should not be overstated.

The conscientious atheist voice tends to get lost in the religious arguments. The free exercise clause and the establishment clause exist to promote freedom, not to allow one sect to endanger people, and not to privilege a certain group. They have a role in preventing theocracy, and preserving minority viewpoints, important aspects of freedom in the US Constitution. To err on the side of religious freedom when there is no danger (and no cost so society as there would be in religious and conscientious objections to paying taxes) makes sense in the big picture endeavor of lasting freedom. Strict scrutiny may give the public more assurance that the mandate is necessary and that the constitutional issues were addressed in the deeper way.

All things considered, shouldn’t the attention move to places that forbid vaccine mandates like Montana, Utah, Texas, Michigan, Indiana, Arkansas, Tennessee, and Georgia, where state worker vaccine mandate bans are in place? Or the 21 states that forbid vaccine passports? Legislative overreach should face challenges by those who see keeping people safe and protecting society’s most vulnerable as a tenet of their religion.

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Fair Compensation for Data: Privacy, Blockchain, Ethics, and Data Science Converge

When we look at privacy, many goals converge. I separate constitutional privacy and protection from government surveillance from personal confidentiality. Having explored whether one can survive without the other, I remain uncertain. But I am certain that a balance of values would lead to more fairness and that confidentiality is not the only important ethical parameter in big data.

I especially like this article in the Verge, “Hospitals are selling treasure troves of medical data — what could go wrong? They don’t need patient consent to use de-identified data,” in which Nicole Wetsman interviews Eric Perakslis of Duke Clinical Research Institute. The interview notes that deidentification sort of provided a windfall, yet it is neither foolproof nor necessarily the best way to engage in medical research. Perakslis says, “I think most healthcare institutions are interested in using data for profit and for research. I don’t think there’s anything wrong with that if you can actually say how you’re returning the benefit back to the core mission of the place.” If the data ends up in a large repository for shared data for medical research, it is often assumed that the public benefit (more research and larger data sets contribute to public health) and the potential personal benefit (research may cure a disease the subject of the data has) ethically justify uncompensated data use. Here, the unfairness I address is the absence of payment for personal (later deidentified) data. It is a “treasure trove” and financial deals should include the subjects of the data.

Fairness in Data Practices

Cybersecurity is an ethics issue that is especially pressing in the healthcare community with patient data and records at the forefront of privacy concerns. In many posts, I have addressed the role and inadequacy of informed consent in the privacy arena. Specifically, informed consent should not be used to place responsibility in the hands of potential victims of security breaches and unwanted surveillance, nor should it be used to justify uncompensated commercial uses. Other areas of the law, from subpoena power to pharmaceutical advertising must change to meet the new world of data to prevent exploitation of people’s data for commercial uses.

Deidentification does not equate to it no longer being “yours” or being something derived from a person who could be compensated. It simply meets HIPAA requirements and allows the free flow and accessibility of data. Permission in the form of informed consent, arguably not a voluntary thing, does not give free rein over deidentified data.

We already see online access to reports from doctors to patients confirming that cybersecurity efforts create an atmosphere of acceptable safety for identifiable communications. If records can travel both directions, and bills and insurance reimbursements go directly to patients as well, data compensation must be achievable. Its having been deidentified is not necessarily the line in the sand that prevents compensation.

In Barcode Me, I argue for payment for data that is sold and resold. This post explores the role of blockchain technology in repairing the ethical lapse of failure to compensate. Privacy is conceptually entangled with the goal but is not necessarily an impediment. While deidentification is currently required (in certain circumstances), deidentification rules must not be an excuse for a failure to compensate.

Anne Zimmerman CC-BY-NC

Background on Blockchain and Health Care

(From a tech-ish bioethicist not a data scientist.)

Blockchain’s application to health care is promising for several reasons. Its decentralized ledger that allows secure transactions involving personal data also offers validation. Improving trust in the data and avoiding opportunities for data corruption, while making data accessible can help in the delivery of care as well as in medical research. The ability to have accessible data offers convenience as well as security, especially if the transactions can be transparent as well as private. (Transparency in the transactional verifiability yet deidentified by codes and encryption for many uses.) A major use is securing patient data. The decentralized aspect of blockchain could be a device for patient health records shared across a consortium of companies, but not all uses of blockchain in health care are as patient-centric.

Blockchain technology can give providers more access more easily, arguably improving care and efficiency, while allowing patients to have more control. One article asserts that “miscommunication between medical professionals costs the healthcare industry a staggering $11 billion a year.” Its ability to prevent miscommunications and offer access to data make blockchain poised to help the industry save money, something that may equate to healthcare improvements that benefit people. It may lead to efficient diagnosis, improved access to large databases, and arguably it could work to improve delivery of precision medicine. (Even with blockchain, arguably institutions should use some kind of zero trust or perimeter-less security—not all people or devices in an organization should have access to even deidentified data.) Blockchain is also being used in supply chain, and even to track custody of pharmaceutical shipments.

Could Blockchain Be the Answer to Paying Individuals for Their Data?

blockchain bioethics
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Blockchain is likely the technology best positioned to work backwards and create a method of fair payment for data without any publicly accessible deidentification. One idea could be setting up transactions on a decentralized ledger that go seemingly backwards. That is, usually we see the patient as the provider of a primary piece of data in a medical record, and then the hospital deidentifies, aggregates, and uses it for research or eventual sale. Then data miners and other aggregators continue to resell it. Additional transactions could start from another point or various other points in the system. For example, the “seller” (e.g., hospitals, drugstore chains, radiology businesses, and consumer genetics businesses) could create a new transaction (after selling the data) sending payment back to the original person whose data it is (the subject) through either a tokenized currency or a payment system. The original organization (the seller) could distribute back to the individual without any accessible deidentification using blockchain and decentralized ledgers. Blockchain might hit some of the key issues like reliable payment, preventing any changes when data travels, and it would prevent mass storage of data payment records in one place.

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Pooling and Group Payback

Even without any special technology, the pooled idea could operate through an industry standard or regulation simply saying if you receive services here and signed off on anything using your data, you will be paid if it is ever sold. If companies or hospitals do not want to risk the chance of reidentification through any direct payment scheme, they can pay at the point of data collection. As is, access to data is fueling largescale marketing that pays off for corporations while the people are expected to be happy without compensation.

The solutions I propose are highly simplified versions. Whether paying for each additional aggregation or sale is possible or not, some payment upon the initial sale or at collection is feasible and would solve the injustice of signing off for one purpose while data makes its way to commercial use.

Side Note

Others recognize a different ethical problem with deidentification—that it precludes a built-in outreach to people who would benefit directly and personally from a medical discovery predicated upon their data. The article provides an innovative idea (using NFTs) and cites the inability to legally deidentify as a roadblock to patient care predicated on research using the patient’s own data. Gross M, Hood A, Miller Jr R, Nonfungible Tokens as a Blockchain Solution to Ethical Challenges for the Secondary Use of Biospecimens: Viewpoint JMIR Bioinform Biotech 2021;2(1):e29905 URL: https://bioinform.jmir.org/2021/1/e29905 DOI: 10.2196/29905

While care is a worthy reason possibly to deidentify in a private way, it is also something doctors could address by remaining well-versed on new discoveries in their field. That is, if data from a person with a given disease were used for research and a cure were found for that disease, that person’s doctor should be constantly reading up on the state of the care for the disease. Such a person also could be in touch with researchers by searching who is researching a disease. Yet the NFT idea or other ways to direct research benefits to patients is compelling.

Disclaimer: I am not a data scientist but enjoy tech, crypto, big data ethics, etc.

Featured Photo 126119576 / Blockchain © Iurii Motov | Dreamstime.com

Undermining Obesity Solutions: The Unspoken Tension Between Bioethics and Nutrition & Fitness

Obesity, one of the prominent and predictable risk factors for severe COVID-19, was not highlighted as much as it should have been from the early pandemic on. It, and arguably other comorbidities and chronic health problems associated with it, seemed to be played down compared to other issues. Most importantly, in discussing obesity, there was no urgency. It was viewed as a static situation, accepted as fact in the background playing a role in risk, but not in solutions. In the time it took to develop and distribute a vaccine, people could have decreased some risk factors for severe COVID-19. The bioethics narratives surrounding risk factors often properly centered on socioeconomic and racial disparity, but they were not forward thinking and failed to offer short-term recommendations like weight loss as an emergency measure. While recommending even more serious isolation for some at-risk people, there was not a largescale public health movement to inspire dietary and exercise changes in the short term. Get-healthy-style messaging was not prevalent. To study this as an ethical lapse requires examining the roots of public pandemic messaging.

Public Health, Public Policy, & Obesity

Health can improve somewhat quickly. Fast weight loss is possible and can resolve other issues like high blood pressure.  Government prioritizes health in some ways and funds many programs to encourage weight loss. Yet there are, of course, many explanations for the failure to significantly decrease rates of obesity, many of which concern government, corporate lobbying power, and low wages. Food deserts remain in many areas. Hours worked may preclude cooking using fresh ingredients. Food production has become globalized and lost its local roots. Government subsidizes corn used for corn syrup. The public health discussion surrounding food is fraught with conflicts of interest and hurdles to success. Arguably the biggest barrier to public health initiatives is other public policies.

Anne Zimmerman CC-BY-NC

Items go from idea to grocery store shelf without an impact statement on obesity. Those in poverty are “the most prone to obesity” in the US. At the policy level, conflicts of interest and the role of agricultural policy, minimum wage, and the many social, political, and financial determinants of health must be openly discussed.

Incentives and punishments have been explored as ways to promote healthy behaviors. The scope of ideas ranges from financial incentives by government entities or insurers to condemnation of those carrying extra risk, the costs of which may be distributed throughout the population due to government services like Medicaid or other pooled risk like insurance. Depending on how one measures success, many programs are successful at local levels and may be keeping rates from rising steeply even if they are not demonstrating largescale decreases in obesity across the country. Obesity is unlikely to subside if the conflicts of interest dictating affordable food supply coupled with income inequality remain the status quo.

And we may want to consider obesity contagious— having a close friend who has obesity increases one’s risk of developing obesity by 71 percent. Obviously, it is not contagious in the traditional way. But there is a group effect.

Yet my question has to do with the narrative. Was there a responsibility in the bioethics arena to have devoted more of the pandemic-related news, social media posts, and interviews to diet and exercise?

COVID-19 & Obesity

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Data from September 2020 in “Obesity Reviews, an international team of researchers pooled data from scores of peer-reviewed papers capturing 399,000 patients. They found that people with obesity who contracted SARS-CoV-2 were 113% more likely than people of healthy weight to land in the hospital, 74% more likely to be admitted to an ICU, and 48% more likely to die.” Had obesity been addressed based on its relationship to H1N1 deaths through public campaigns, people may have known more about the links between inflammation and severe respiratory viruses. People with obesity make up 40 percent of the US population. An April 2021 study reported that 78 percent of people hospitalized for COVID-19 were overweight and 50 percent were obese. The highest COVID death rates were in countries with the most obesity. We have not explored whether depicting obesity as an emergency rather than as chronic would have saved some lives.

Fear of a Blame Narrative May Lead to Dangerous Quiet

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Shame as a strategy that calls for social pressure to change may be misplaced, and fails to recognize the many causes of obesity, but a failure to use public health messaging to express the urgency is an ethical lapse. When bioethics views obesity through the psychology lens that confirms the detrimental effects of shaming, some ethicists may overcorrect by tiptoeing around transparent discussions at the expense of delivering life-saving information with the urgency it requires. (For one exception, see highly criticized Daniel Callahan’s article and viewpoint.) In particular, the bioethics community tends to be shy about anything that people could perceive as blaming or shaming individuals. Preparation for future pandemics should clearly include decreasing the occurrence of obesity in the population as a strategy using the logic that obesity and its correlates pose(d) a vulnerability to many past and present viruses. Just compare the urgency of the vaccine messaging (certainly rightfully urgent) to weight loss messaging during the pandemic and the outsized role of bioethics in the vaccine conversation compared to the obesity one.

The Role of Specialists

Possibly the role of experts is part of the problem. Within public health, the pandemic was relegated to infectious disease specialists. Then, many focused on a vaccine, an important use of public funds and attention. The behavior side focused on masks and social distancing, and at first, on hand washing, rather than on diet and exercise. Most comorbidities were listed rather than discussed. If obesity had been center stage as a curable severe risk factor, it is possible (probable even) that some people would have recovered from obesity during the past 18 months thereby decreasing their potential for severe COVID-19.

Cancel Culture

Adding to the bioethical lapse, a new tension arrived between people who promote vaccination and people who promote nutritional supplements, a healthy diet, and active or lower stress lifestyle, even if they too promote vaccination, although especially if they do not, like Dr. Joseph Mercola. In the climate of cancel culture and political polarization, the search for objective data and the questioning of mainstream medicine is being incorrectly aligned with an anti-vaccination or anti-science culture. The doctors promoting a constant message of health may effectively lead their social media followers or patients to understand and maintain healthy habits. Yet there is a danger if doctors call for people to remain unvaccinated, something to which those who blindly follow might fall prey. But is it possible that someone who opposes vaccination may be correct about something else, like diet and exercise?

The New Politicized Attack on Supplements

An observation is that the media, the bioethics community, and the public health apparatus condemn people “hawking” supplements, but have only to look at the opioid epidemic to see why people might prefer supplements to pharmaceuticals. Political beliefs have little to do with that. The same condemnation does not extend to those “hawking” pharmaceuticals, as every mainstream media outlet engages in heavy pharmaceutical advertising. A divided media has led to aligning supplements with right-wing talk show hosts who advertise them, properly condemning false claims. To negate a credibility or trust issue, as with medicines, people should research herbs and even food, question the integrity of salespeople and manufacturers, and do their due diligence.

(There is a proof issue that feeds supplement skepticism — it likely arises from an education that may value placebo-controlled trials over epidemiology or other types of evidence, and that crowds out funding for herbal remedies. It can be a healthy skepticism and help people avoid supplements that do not work, while choosing ones that do.) In general, advertising is not a useful source of objective data whether through a talk show host or by a pharmaceutical company.

While supplements are not likely to outweigh the importance of diet and exercise, they have a useful role in treating certain conditions. Doctors like Mark Hyman recommend both medicines and supplements depending on the health issue. As a result of the politicization of the issue, people may overlook diet, lifestyle, and natural supplements, further straining the healthcare infrastructure. The condemnation of all supplement use, even for distinct health problems, seems to me a pharmaceutical win. Nonetheless, I have concerns about doctors who sell their own lines of supplements.

Healthy Distrust & Critical Thinking

Tribalism and polarization can negate thinking. An unwillingness to question authority, or the blind following of experts, as a tribal position, may be a new development. That is, there may be a trend toward this illogical view: If some far right-wing people and talk show hosts who have misconceptions about the value of the COVID-19 vaccines question authority, then no one else (outside of that tribe) should question authority. The notion that the “smart” people follow orders is simply wrong and can lead to blindly following public health advice that later proves incorrect. I would argue free and intelligent people question, do their own research, read primary sources, and compare viewpoints. I find that true regardless of political affiliation. The counter to too much skepticism should not be the absence of any skepticism. It should be fostering public trust through accountability.

Any media-driven tug-of-war between supplements on one side and beliefs in vaccine efficacy on the other is detrimental to health. And pitting natural solutions against pharmaceutical ones has no benefit to the field of bioethics and may be detrimental to credibility as well as long-term health.

Conclusion

Some people argue that a neoliberal sociopolitical structure places too much responsibility on individuals. While in the healthcare context, shirking a duty to provide care is an ethical lapse, and the lapse relevant here concerns conflicts of interest, public policy failures, and the absence or deemphasis of a helpful, truthful narrative, I would also argue that respect for individuality, individual rights, and freedom calls for transparent, difficult discussions about obesity, diet, and lifestyle. The narrative also should include public policy beyond health policy. That is, there is definitely a role for bioethics here in explaining the urgency as a matter of moral priority. Polarization or a fear of failed or negative narratives that shame or blame should not be an excuse to quiet an empowering narrative about overcoming obesity.

Considerations, Hypotheses, and Open Questions

  1. Broad public policy—maybe we have made it so difficult to achieve health that the public health infrastructure has relented and decided to focus on cures while it is not effective at prevention.
  2. The counterargument is that the emergency aspect called for the focus on medicine and vaccination–was there no time to focus on health as well?
  3. The conflict of interest of the food lobby in federal, state, and local policy has a cost in health. It would be valuable to explore the data and the ethics.
  4. Too much stock in experts—Obesity experts may help some clients but have not succeeded in broadly solving the public health problem. It could be that people cannot follow the advice, the advice is unattainable–the food is too expensive or too far from their food desert where they rely on liquor stores for packaged food –, or the advice is incorrect and overly influenced by lobbyists.
  5. Some people do not have access to diet and nutrition experts, especially holistic ones trained in affordable organic and natural solutions.
  6. Apps and other sources of accountability that are affordable may become more useful than nutritionists and doctors.
  7. Nutrition science – is it possible that the calorie is not the best measure of how food will affect body weight, body mass, and health?
  8. While unworkable for most people, moving may be a viable way to improve health for those with the means. Examining moving as a weight loss tool could lead to a better examination of geographical health trends and enable communities to replicate good examples.

Featured photo 232762149 © Elena Eryomenko | Dreamstime.com

From OR to EMR: Informed Consent’s Rocky Transition to Data

Hackable Part 4

A hyper-focus on informed consent as the primary tool to ensure autonomy represents some lapses in the field of bioethics. To me, informed consent is more valuable in traditional clinical care or medical research than in engagement with big data. Yet consent is the operational tool behind widespread data collection and the prevailing framework for big data. Consent opens the floodgate to permissible data uses and leads to vulnerability to both nonconsensual and unexpected uses. Perhaps informed consent is shifting responsibility, making people bear risk for what should be a corporate responsibility.

Informed consent seems like something that acknowledges people’s freedom to choose and is presented as person-centric or empowering. I question that assumption and look at the role of consent in making a system work conveniently and easily, chronicling a permission that may be used as protection from liability, yet not always in the interest of society, or of the person seeking care or whose data is collected. Rather than being consistently mutually beneficial, informed consent in the context of medical and wellness data may be a convenience connecting records to insurers, allowing for electronic medical records as well as search histories and purchasing preferences that indicate health conditions, and feeding large pools of aggregated data. Informed consent can protect the body from unwanted touch but is not as adept at protecting people’s data. That is, informed consent alone is insufficient to empower people in the collection and use of data, yet hospitals, radiology centers, web-based applications and ecommerce, and practitioners ask more of it than of other principles.

In the OR

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The term “informed consent” emerged in the 1950s. The concept arose from much earlier cases where people seeking medical care were subjected to bodily intrusions to which they did not consent. See for example, Mohr v Williams (surgeon operated on left ear when plaintiff had agreed to surgery on the right), Pratt v Davis (nonconsensual hysterectomy), and Schloendorff v Society of New York Hospital (nonconsensual hysterectomy). In Salgo v. Leland Stanford, Jr. University Board of Trustees (1957), the court first used the term” informed consent”. Canterbury v Spence (1969) took a patient-centered view of informed consent, requiring disclosures of certain risks. Doctors must include small risks of severe harms, yet, to be disclosable, risks must be known. Informed consent became the assurance that doctors must respect patient autonomy, a concept arguably eroded by competing interests and limited in certain circumstances like emergency medicine. Yet it was around well before modern technology and big data. It did not come from a tradition of protecting data. It arose from a tradition in the doctor-patient relationship having to do with bodily acts. Is the same old informed consent enough to protect consumers, especially consumers of healthcare, in light of data mining?

Informed consent is a valuable first-line protection, but it is more meaningful in surgical or clinical settings when the subject of the consent is the medical procedure or medicine than when used for data collection, high-tech radiology or digitized results, or electronic medical record storage, where model language exhibits its role in preventing liability.

As noted in a post about voluntariness, to be realistic, consent should be viewed as a condition of participation rather than as fully voluntary. Consent is a quid pro quo and may bar future complaints—it is seen as a waiver. It is an entry fee to receiving medical care, to being able to use certain websites, and to access the healthcare system in its current form.

Anne Zimmerman CC-BY-NC

Electronic Medical Records (EMR), Images, and Big Data

For example, I will give you consent if you will give me an MRI. When the consent form says my data will be shared with an insurance company and used for medical research, I sign in exchange for the MRI. The person may assume the medical research is secure, in-house, and limited to deidentified data, and it may be. The medical research may be added to public research databases, access to which is often password protected. In this case, let’s say it is a brain MRI. It is possible to identify people from MRIs using facial recognition technology. Consent, while it may be fully informed or somewhat informed based on the person’s understanding of technology, does not prevent identifiable imagery or digitized faceprints from making their way to less secure and even global research portals, and eventually, in a deidentified format, to data miners. It also does not prevent genetic discrimination based on the results as the mere collection of the data may create a vulnerability. Ultimately, consent does not control data very well.

In the data context, the consent merely leads to collection and storage of data in ways governed by other policies, laws, and practices. As a side note, HIPAA also was not designed to protect data as much as to create rules surrounding the portability and accessibility of data. In medical ethics, the good of the data (“beneficence”) is the ability to learn more about people, diseases, and health. Rather than viewing privacy alone, the medical research community sometimes weighs risks to privacy against the benefits that may derive from the data with an eye to maintaining deidentified secure pools of data. Many privacy laws as computers were developed focused on certain characteristics, distinguishing personal data from nonpersonal, anonymous, or deidentified data. Resolutions concerning data privacy often are dual purposed. For example, the Madrid Resolution of 2009 approved by the International Conference of Data and Privacy Protection Commissioners aims to protect personal data and facilitate the flow of personal data “in a globalized world.”

In medicine, if a person consents to surgery understanding the risks, and one of the predictable risky events happens, the consent may serve as an appropriate waiver of the right to sue, or even to complain. Well, you knew the risks. Even when consent seems involuntary and is viewed through the lens of access to care, the realistic quid pro quo, it is a good ethical cornerstone in medical care. Informed consent’s liability protection may end where medical malpractice occurs. In cybersecurity, even if the person knows some of the risks, there is reason to question the ethics of how the person is interacting with the technology, and how vulnerable society and people are to harms that exist outside of consent.

The data world is larger than the operating room. The risks are of a totally different nature from the physical risks, or mental and emotional risks of physical harms from medical care. The onus should not be on the person consenting.

Data and Non-Bodily Harm

Anne Zimmerman CC-BY-NC

The harms that exist regardless of informed consent can be categorized as illegal acts, accidental or negligent data leaks, and financial injustices. Privacy categorically cuts across all three.

The Illegal

First, some are actual inappropriate and illegal actions like hacking, ransomware attacks, foreign adversaries using data for strategic advantage, extortion plots, identity theft, bullying, and stealing by hacking bank accounts and financial data. Ransomware attacks could hurt those seeking care as hospitals may be unable to see encrypted medical records, something potentially dangerous for people experiencing medical emergencies. Hacking is nonconsensual — it operates outside of consent. Consent at the point of collection creates the vulnerability. Cybersecurity is arguably protective, yet we observe crippling effects of ransomware attacks or data breaches fairly often. Assuming that everything is hackable would make people reconsider what information they share and how. Maybe this “hackable assumption” would reel in certain behaviors and highlight a lapse in privacy law and policy. That is, people’s permission, or explicit informed consent, is not enough to protect them.

The Mistakes

Second, unintentional data leaks or inadvertent security lapses by medical systems, hospitals, or insurers may expose people’s personal data and financial data that hospitals collect. Employees may save data in a non-secure way or temporarily put data on a phone without someone’s consent. Leaks that reflect purchases or search history may also divulge personal medical issues and would not be protected by privacy laws specific to health care. Consent does not allow poor storage, yet it is not powerful in preventing it.

The Unfairness

Third, there is financial unfairness when industry profits from marketing and advertising using the data. With or without consent, the profit problem exists. In the medical setting, the informed consent paperwork does not mention that the person signing would be waiving the right to compensation for the use of the data, the deidentified data, or even a faceprint, which is not deidentifiable. It is just assumed that any piece of the data would be given by the person seeking health care for free, that the hospital can use it for research with consent, and will sell what it is permitted to sell, and that MRI or other radiology businesses, pharmacies, online stores or website owners, medical businesses, biotech firms, and device sellers can sell more broadly to data miners as they are less constrained by regulation. In Barcode Me, I assert that I would like compensation for my data.

Key to Solutions

Privacy Enforcement Occurs After the Damage

The law covers privacy problems both by punishing after the fact and by requiring efforts to protect the data. The HIPAA “Privacy Rule”, created to meet the Fair Information Privacy Practices, is enforceable various ways. For example, if personal health information is leaked, the Office of Civil Rights (OCR) can fine wrongdoers. The Department of Justice (DOJ) also has enforcement authority. And the Federal Trade Commission (FTC) can enforce. Most enforcement options concern “deceptive” or “unfair” practices yet there have been many fines for software flaws and security failures. But the enforcement solutions do not protect people in advance and often “best efforts” are not enough.  The principles behind privacy laws could fill in where informed consent stops protecting. Laws that balance portability, data sharing, and convenience do not account for people’s rights as well as principles of fairness, transparency, and use and collection limitations would.

Higher-Level Public Policy

At a higher level, regulations and best practices could alter incentives that encourage data resale and overuse at many levels. For example, pharmaceutical companies’ desire to purchase prescriber identifying information for marketing, especially for detailing from data miners may not be ethically justified—and if marketing and advertising were regulated more stringently, the data would become less valuable to them, disincentivizing its purchase. (Although, for now, free speech protects some marketing tactics.)

Also, laws surrounding liability influence consent. I would assert the consent should not preclude a cause of action concerning data. Holding organizations to cybersecurity standards could lead to improved technology, innovations in the cybersecurity space, and an increased role of collection limitation to reduce risk of liability. People consenting to collection, use, or storage are not really taking the risk in a meaningful way—they merely are asking for participation in the care, radiology, or purchase, or they are wishing to share information for medical research. Of course, they expect best efforts to keep data safe. Consenting to data collection, storage, and use does not do the same task as consenting to surgery. Much data collection that involves health and wellness, especially in the online ecosystem of purchase and search history, could be governed without the “cookies” nonsense. Rules about data collection could govern, allowing people to freely use websites (generating profits for businesses) and guaranteeing them that no extra data is collected, or that it would not be sold. The same holds true for the quasi-medical consumer businesses like radiology outlets or pharmacies. Companies could purchase people’s data explicitly. That is, the whole thing could be turned on its head.

Thoughts

People and the population at large do not have a perfect avenue for protection from those harms to which consent is irrelevant. As a matter of the general welfare or national security, reimagining informed consent would be valuable considering its failure to operate neatly outside of traditional medicine and scenarios that involve the body. The framework of consent for the collection and use of machine generated images, data, purchase history, and electronic medical records is insufficient. It is clunky and allows a universal shrug—you consented, you accepted cookies, you submitted the school form, you permitted the use for research. Other laws pick up the pieces after a breach. Principles like collection and use limitations may need to be pushed to the forefront of data ethics and operate without a simple waiver. Once the door to participation is opened by “informed consent”, a body of protections should be in place that elevates the other principles, especially financial fairness. The aggregated, sold, and resold data is a vulnerability. And it is unclear that consent would make any difference.

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Resilience: The Role of Reactive Critical Thinking in Bouncing Back from Disasters and Disruptors

Resilience is a form of political capital and a necessary element for health and wellbeing. A resilient democracy might weather distress, just as a resilient person might, but what are the prerequisites of such resilience? The ability of physical, political, economic, and social structures and people to bounce back from socioeconomic, political, climate-related, or health disasters is crucial. Key elements include common sense, the ability to learn from past mistakes, and operationalizing multiple solutions. It is crucial not to plan exclusively for one scenario only to face a different one. Government resilience is generally steeped in preparedness. But even with the best preparation, unexpected events can be catastrophic. “What if?” can be followed with seemingly far out, unpredictable events (what if a meteor hits New York City right now?) and with likely events (what if low lying coastal land floods again during this hurricane season?). The problems can be sociopolitical: what if the US experiences a civil war? or a sudden economic crisis? Increasing uncertainty as we witness rapidly changing technology, severe climate events, and global sociopolitical flux requires bringing certain constructs together.

Beyond Preparation

We cannot always apply a “what if” strategy – some things will not be predicted, some predictions will not be societally accepted preventing devoting resources to preparing for them, and some things are so unlikely that diverting resources from likely problems would not be ethically justified. Using hindsight, a much more robust program (like the Predict program of USAID) to identify potential viruses that stem from the animal population would have been a good use of funds had it prevented or provided easy correction to the pandemic. Learning from preparation mistakes would lead to better ways of dealing with expected events, whether likely or unlikely, but, importantly, analyzing the best way to think when addressing a disaster could inform a framework for reacting to the unexpected.

resilience
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“Emergency preparedness” is not equipped to protect in the best ways, especially when political structures and cultural traits combat the ability to immediately follow a core group of experts. Early action also could falter if the route followed is incorrect, like failing to mask and contact trace early in the pandemic. E. William Colglazier argues that following the “consensus assumptions” has led to high-cost mistakes. I would argue some approaches to unexpected events, disasters, or revolutionary discoveries interfere with resilience: overreacting and then overcorrecting; failing to react in time; and over-planning exclusively for one scenario while failing to plan at all for the less likely but potentially harmful scenarios.

Part of the purpose of this critical thinking bioethics website is to explore ways we think through problems. Many problems are new and complex, like problems arising from social media, facial recognition, unpredictable weather in a predictably changing climate, or conflict and war. Others are longstanding like age-old fights for healthcare autonomy in a system where the vestiges of paternalism endure. In approaching problems in the ethical space, especially those affecting health and the environment, problem-solving techniques must be adaptable, and accessed from and used across many disciplines. Critical thinking skills allow a better framework for analyzing normally unrelated issues that prove to be interwoven.

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For potentially catastrophic weather events, detection systems like those measuring oceanic earthquakes can serve to save populations from tsunamis. Moving to less dangerous living conditions can prevent harm, but has its own costs, both emotional and economic. Protection of the vulnerable is first and foremost. Using the language and philosophy of “no natural disasters” highlights preparedness, but philosophies that extend to resilience must offer more. We were not prepared for X. Now what?

Disruptors, Catastrophes, and Tipping Points

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Disruption is a buzzword in the tech industry. Blockchain technology is a disruptor, as is cryptocurrency. Amazon and Uber are disruptors – they changed how we do business– government entities were unprepared to deal with their ability to upend traditions and as a result, the conveniences and needs they filled came at a cost. A trend of workers becoming independent contractors with little protection, taking loans to buy their own cars or other materials, and getting low pay without benefits has a societal cost.

social media
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Identifying social actions as disruptors is helpful. For example, social media, a known disruptor in tech, had a snowball effect of being a cultural disruptor. As a tech disruptor, it created a new market with billions of customers. As a cultural disruptor, it sowed unrest by allowing news to travel faster, people to find their “tribe” easily, and as a result it plays a role in fracture and polarization. It can hurt young people who feel excluded and is associated with increased depression and it may decrease attention span. But it also connects people with long-lost friends and keeps families in touch.

The fall of governments, violence between regimes, and ensuing mass migration can also be viewed through the lens of disruption. Normal processes and systems of government can end in a quick motion—the change in Afghanistan’s rule, where now barbers have been asked not to trim men’s beards, the assassination of the President of Haiti, where turmoil ensued, and the challenges immigrants face in multiple unwelcoming countries like Haitians leaving Chile only to be turned away by the US. Some countries also are failing to maintain their democratic ideals. To shore up the resilience of democracy, the roles of governmental structures that empower people must be explored. To shore up the social fabric and economic sustainability of non-democracies, failed states may need access to humanitarian aid from international organizations.

climate change hurricane
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While climate change is somewhat steady and predictable, harsh weather events and their fallout are not. Climate migration is in many ways a science—experts predict it. But the impact of Hurricane Ida in New Jersey left social systems strained, disrupted local economies, and caused death. The preparation was lacking and the precursors for resilience were not in place, making bouncing back take longer. At the community level, once the bad thing happens, resilience-minded thinkers can contribute. Sometimes picking up a broom and clearing a roadside drain is the commonsense measure necessary. Attributing all fault to and expecting all solutions to flow from government will not lead to maximum resilience.

The new restrictive abortion laws may be a disruptor in a sense. If permissible, restrictive laws will inevitably disempower women. Resilience will require creating new networks, exploring political avenues, private sector solutions, and non-profits. Women historically tend to be very adept at resilience. To contextualize women’s rights and disruptors, resilience would mean a democratic voice, choice, and possibly compromise. As another example, emergency contraception was a disruptor enabling people to prevent pregnancy after intercourse. As of 2015, over 20 percent of women of age  15 to 44 had used emergency contraception like Plan B. But it has been the topic of debate among those who harbor religious beliefs opposing it, and in some locations, pharmacists have resisted supplying it. Resilience among advocates, women’s groups, and organizations offering medical care can shore up constitutional rights and prevent governments from intruding on personal decisions.

Similarly, to me, District of Columbia v. Heller changed the Second Amendment suddenly and drastically and mass shootings increased after it. The jurisprudence was slow to show resilience, but over time, some new state laws have pushed back, and they aim to improve safe gun storage, use, and oversight. The Second Amendment itself may not return to its former iteration, which was more limited – it is difficult for supporters of sensible gun laws to be resilient when the highest court makes a significant change in jurisprudence. Even with three branches of government, new ideas may be necessary to stop one branch from overreach.

Brexit was a movement that appeared to take the global economic community by surprise, although it corresponded with increasing nationalism and populism in many countries. The literature notes EU resilience and some efforts to improve supply chain resilience in the UK.

The China Roads and Belts initiative is changing a global power structure and may lead to a tipping point. China’s power over regional supply chains will trickle down and could hurt countries edged out of new markets as well as hurt the self-sufficiency goals of developing countries. Countries need to be resilient to counter China’s influence.

The US, state, and local government and agencies need to exhibit resilience after the January 6, 2021 attack on the capital, the protests in the wake of the killing of George Floyd, and hurricane Ida with local deaths in areas prone to flooding. A resilient electorate may depend on public trust. Trust in institutions like the CDC, FDA, police forces, OSHA, NOAA, etc. would improve resilience when the US faces rapid change or unrest. Without trust, bouncing back is more difficult.

Thinking Skills, Generalism, and Common Sense

Knee-jerk reactions in crises have problematic consequences. But what about thought-out solutions that fail? Colglazier cites the Afghanistan exit as chaos that was grounded in consensus expert advice. In the COVID-19 pandemic, vaccination is the global consensus solution, but the obstacles, both predictable and unexpected, are impeding its use as a strategy for resilience.

Vikram Mansharamani asserts “seemingly unrelated developments may impact each other,” arguing in favor of generalists and malleable skill sets. Mansharamani favors “breadth” over “depth.” Taking his advice and applying it to reacting to unpredicted events, dynamic viewpoints and open-mindedness will allow for new strategies to face problems and successfully achieve ethical solutions. Generalism is needed to link specialists—those who study many areas can be helpful to combat the focus that often leads to experts overemphasizing their field’s role in disaster relief, preventing resilience. Specialization may be tied to the consensus view failures Colglazier refers to where disasters are approached by going all in on one solution.

If many people trained the same way devise the proposed solution, there can be a funnel effect where they validate each other, as seen in US public health. If different fields participate, there can be a broadening of solutions to try. For example, resilience or the ability to bounce back from the pandemic to some degree depends on vaccination rates and achieving herd immunity. Many articles in public health discussed scientific misunderstanding alone, depicting people as gullible, possibly inflaming them rather than winning them over. The social sciences more broadly exhibited understanding and approaches to hesitancy.

In addressing the many impending potential tipping points and uncertainty, we need common sense and critical thinking. Rather than preparing for every possible contingency (and in addition to preparing for those for which that makes good sense) that can happen whether to do with war, health, immigration, or climate, a thinking skill set and a coalition of strong thinkers in positions of power is needed.

Personal Resilience & Critical Thinking

Resilience is the ability to manage stress, adapt to change, and “return to a state of mental wellbeing.” Resilience can be physical, emotional, mental, and social. There are tools in psychology to help people develop more resilience. While we may see that as toughening up, it is also the ability to take time to be creative, think, and become comfortable with change.

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Personal resilience also requires making sense of things—I argue that critical thinkers accept the unorganizable and organize and influence what they can. They avoid failed strategies and have a willingness to try unproven strategies yet the common sense to try multiple solutions at once rather than put every resource into one solution. They are aware of many choices, pros, and cons, but are also decisive, even if the decision is to employ more than one strategy.

Personal resilience informs societal, governmental, and global resilience. Large societal and even global structures need to toughen up; and they need to include creative ideas and apply old ideas that work and new ones that might work.

Societal Resilience

Include the Spectrum of Ideas

Partisanship interferes with resilience, yet so does complacency and a failure to challenge the assumptions of those in power. Polarization hurts the open roundtable discussions. A climate change denier and a tree-hugging environmentalist who will not touch disposable paper products at all and uses only a solar panel for electricity each will have more trouble appreciating the views of the other side if they are the only two in the room. Centrism, or even the consideration of all viewpoints along a spectrum, is a frustrating listening task but appears to be the only route to positive debate and common sense. If twenty subtly different views along a political continuum are voiced and respected, it is unlikely a polar view or a stalemate will prevail.

Look to Local, Federal, and International Components

Resilience often includes strong communities. In a flood, communities are never sure whether and when FEMA will come (and FEMA is crucial in emergencies) but a few neighbors and bags of sand help. Communities shore up local infrastructure and are the place where neighbors react together. That initial coming together after an emergency is itself an act of resilience. New York City after September 11 exemplified every type of resilience: community, buildings and structures, businesses, transportation, real estate, and education all eventually bounced back. Resilience is about clean up, building back better, strengthening infrastructure, and rising above.

Eliminate conflicts of interest

Government would be more resilient if people had public trust and confidence in government and corporations. The COVID-19 vaccine arguably would have been accepted by more people sooner if they had confidence in the CDC, FDA, Pfizer, Moderna, and Johnson & Johnson, and the media.  

Nonspecialized critical thinking and common sense may be effective tools to foster resilience after unexpected events. Individual and societal resilience may rely on the same characteristics making individual thinkers an important part of collective solutions. Looking outside specialties would allow different frameworks to contribute to solutions. Many minds would bring creativity and perspectives that may better identify risks of linear strategies produced by those educated in the same field. Bioethics can have an important role in ethical responsible outcomes by applying critical thinking across relevant disciplines like environmental science, immigration, law, technology, political science, economics, social work, and policies affecting the social determinants of health.

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COVID-19 Vaccine Hesitancy: The “Misunderstanding Science” Issue Is Just a Symptom

COVID-19 vaccine hesitancy requires a trust-based solution. A response to societal problems should be steeped in social solutions. Science does the most good if it coexists with public trust. A focus on misunderstanding science as a primary reason for refusal to get a COVID-19 vaccine distracts from failing to believe scientists and the other reasons for hesitancy. This post is a follow-up to one examining religious refusals. Arguably, no science is necessary to absorb the number of deaths, the nature of the emergency, and even to assess the role of the vaccine in decreasing severe cases.

Highlighting the Danger of COVID-19 Vaccine Hesitancy

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Vaccine hesitancy can reflect reasonableness and rationality, protective parenting, and precautionary behaviors. It is worth assuming the logic that supports some hesitancy as a start to repair some of the distrust. One misconception is that all hesitancy is bad. Bernice L. Hausman recognizes hesitancy as an appropriate check on scientists and government and in her book, Anti-Vax, voices and backs up with evidence many of the rational reasons for which people question vaccines or require additional information. She asserts in an age of “helicopter parenting” discomfort with the many vaccines expected or required at very young ages is predictable and often comes from well-educated adults. Addressing them with an understanding stance and asking for a small sacrifice for the public good makes sense in the hesitant population. The best argument may acknowledge that some vaccinations are less justifiable and the ethical arguments in favor of those are weaker, but the COVID-19 vaccine speaks to an ethical imperative to save your neighbors and yourself.

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Some Hesitancy is Consistent with Science as Usual

Waiting for data aligns with science—so those waiting for more data should be recognized as having views completely consistent with science as usual, yet inconsistent with the unusual speed of the pandemic and the degree of risk of remaining unvaccinated. The same scientific community that assures people pharmaceutical safety is worth the long wait must reconcile the crucial difference: the pandemic is an emergency. Common sense makes it clear—but science is devised purposely to hold clinical trials and observe and record results over time. The discrepancy in methodology, the need to rush, must be framed explicitly with a focus on the risks of the disease compared to the risks of the vaccines. Depicting those who wish for more clinical trials as “misunderstanding science” is not exactly correct, although they likely misunderstand the gravity of the disease or are unconvinced by the available safety data.

Understanding Science is an Unnecessarily Tall Order

If misunderstanding science were the root cause, then simple science lessons would win everyone over. Importantly, some people dislike vaccines for reasons that operate outside of science. Never before have we associated an understanding of the science with medical care to the degree we do now. It seems to me when I was permitted to sign off on my child’s stem cell transplant with a certain degree of understanding, I met others signing off who grasped much less of the science. We were all able to “consent”. It is refusal, as usual, that is at issue. Rather than expecting people to understand new mRNA vaccines and the science behind them, trust is the missing feature: I trusted the doctors at the time of the stem cell transplant.

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While misinformation and a failure to understand or appreciate vaccine science continue to plague the discussion of hesitancy, that line of reasoning implies a scientific education solution to what is essentially a social failing. Social problems call for social solutions. Why do so many people either fail to understand or succumb to misinformation?

Distrust Due to Health Care and Partisanship

One study recognizes that where hospitals failed to meet the public’s needs in the pandemic, vaccination hesitancy is higher. Where healthcare delivery is worse, public trust is generally and predictably worse. But at a higher level, where health is made unachievable or impediments to health exist and flow from government policy, public trust is rightfully eroded as well. People feel left behind. Yet also, in the US, areas with less access to high quality or specialized care also may have more people who vote Republican, a trait correlated with a failure to get the COVID-19 vaccine. “Partisanship is the strongest predictor of COVID-19 response.” Political affiliation is correlated with COVID-19 vaccine refusal and government mandates like masks and social distancing. There are many causes of distrust.

Distrust Due to Psychology and Media

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Republicans who watch Fox News were less likely to become vaccinated than other Republicans. Media is influential in voting patterns. Polarization and a group mentality are societal problems that this time happen to concern science, leading to wrongly identifying COVID-19 vaccine hesitancy as primarily a lapse in the ability to understand science. The assumption that scientific literacy is the primary issue implies that people would individually leave their herd if they received scientific data from outside the group. They sometimes do—so the assumption that misunderstanding is partly to blame is partly correct —but there has been too much public health messaging that is correct to assume that better scientific messaging would win them over. Rather, they do not trust the other sources and do not want to deviate from their social group or media loyalty. Rather than relegate the problem to a failure to understand science, the failure I would identify is a failure of public health to appreciate how much people distrust institutions and the reasons for the distrust.

The desire to misunderstand the science may exist– motivated reasoning, attitudes deeply rooted in social mechanisms, and a desire for validation lead people away from objectively approaching facts.

Toward Solutions

The social controversy operates on the plane of individual rights, community ethics, and corporate power in society. At one level, a patient (rationally or irrationally) may distrust big pharma or their own doctor to a certain degree. Similarly, a consumer of information might distrust the media, or certain media outlets. Separately still, people may wish to exercise rights that go beyond those accepted as reasonable in civilized society historically, also regardless of science. Trust in institutions must become a shared goal to be achieved both by persuading the public to engage and learn and by institutions maintaining or developing trustworthiness. Both the supply of and demand for truthful information should grow.

Conclusion

STEM education is great, and likely would contribute to people understanding science, but it will not solve a problem of distrust or polarization. A good social sciences paper might address important topics: Why is a COVID-19 vaccination mandate not a sign of authoritarianism, but instead a codification of a presumed or desirable moral social compact? What are the distinguishing traits and the proper emergency powers of government, and how can we protect against the abuse of those powers? How was the erosion of the credibility of institutions that provide primary scientific research during the Trump presidency a sign that democracy is vulnerable to ignoring science and to extreme views of individual rights? How do a distrust of media, economic and social discontent, and appeals to those who are feeling left out to join fringe groups with extreme viewpoints impact society?

If a failure to understand the science is viewed as a public trust issue, then shoring up the institutions that provide trustworthy research should be an important goal. I would assert a journey from FDA commissioner to venture capital firm that financed Moderna is bad for public trust. The delivery of second-hand spin on talk shows and social media snippets reflects the financial agenda of media giants and confirms that the media influences the public and furthers the misinformation. The ability to distinguish valid trustworthy research and to discern which organizations consistently provide verifiable valid research stems from understanding institutions, democracy, processes, history, and political and social sciences as well as some natural science. Science is most impactful when more people in the general population know which organizations to trust and how to find reliable evidence. A movement away from two myths (that all vaccines are equally good and that no vaccines are any good) is giving way to an opportunity to understand the relationship between hesitancy and trust and between rights and rules.

Hackable: Children’s Digital Literacy and Voluntary Disclosure

(Part 3 of series)

Children and young adults spend significant time online using apps that collect massive amounts of information, but they may lack digital literacy. Schools also collect much more information than they used to. The voluntarily divulged information in an online profile plus any hackable identifiable data make children vulnerable to future and current ethical breaches. I am concerned about whether the first prong of privacy, confidentiality, will remain meaningful. For a claim of confidentiality to be ethically (and usually legally) enforceable, people must reasonably expect confidentiality. Because adults often do not supervise children’s use of apps, creators of digital platforms, especially social media should be legally compelled to ensure sharing is within groups. The easy ability to share to the public undermines any future claim of confidentiality. Children who become adults and wish to erase their social media footprint will encounter difficulty and have no law or arguably even ethical basis to claim privacy violations.

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The open issue that is also problematic is the relationship between confidentiality and constitutionally protected privacy or a right to be left alone. (A previous post explains two aspects of privacy.) Louis Brandeis referred to a “right to be let alone” before becoming a Supreme Court Justice. He predicted that things meant to be “whispered in the closet” may truly be shouted from “house-tops” as new technologies arise. While he was referring to rudimentary cameras, social media has brought new meaning to shouting from the house-tops.

When a Young Adult Wants a Past Kept Private

Young people generally have less digital literacy and are not contemplating how information could later be incriminating. Many have sizable digital footprints. There are many examples of problematic digital breadcrumbs hurting young adults. For example, a transgender young adult who could not erase evidence and pictures of a younger self that were gender specific may suffer from the permanency of the digital footprint. Having released information, people cannot control its perpetual existence and internet footprint. Many people have had college acceptances revoked due to inappropriate, racist, or offensive social media posts. The digital landscape also makes sexual or inappropriate pictures “go viral” ruining reputations and causing harm. (Societal views destigmatizing sexuality may be helpful in that context.) Cyber-bullying brings another ill-motivated way to attack a peer. Pictures, videos, and posts can become collateral in elaborate schemes.

Despite the risks, children and young adults divulge information online, on social media, and send pictures electronically. The ethics of the public digital footprint of young people must be contextualized. Social media eliminates the ability of young people to make the learning mistakes that pre-social media generations could make. Changing societal standards, even political correctness, can make well-meaning posts become obsolete and offensive. The ever-changing way that Americans discuss race, ethnicity, gender, and politics makes last year’s acceptable remarks next year’s prohibited remarks. Since such remarks may be posted on social media, adults must address the ethical issues arising when society holds children’s past remarks to a current level of perfection. Last year’s woke statements will not seem woke in another few years.

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Digital Literacy or Creating Best Practices for Adults?

Approaches to voluntary disclosures by children must incorporate complex concepts:

  • Is the disclosure truly voluntary? (social media is pervasive)
  • How can privacy’s other prong (freedom from government and other (private) intrusion) be harnessed to mitigate the harm of losing the confidentiality prong of privacy?
  • How can we consider (and predict) future consequences, harm to future adults?
  • Turning it all on its head, can society destigmatize some of the words and behaviors depicted on social media? (sexy, spoke about race in a term later outdated, cultural appropriation that was accepted at the time, strong political views expressed with childish enthusiasm in tweet lengths, commentary on current events without enough information)
  • What is the role of adults in behaviors that shame children and adolescents who post viewpoints formed when they were young, vulnerable to peer pressure, or mimicking parental views that they later reconsider as adults, etc.? (e.g. racist posts by young people may signify a parenting lapse, but the child will pay years later if running for office and applying to jobs.)
  • Can standards of fairness surround social media “mistakes” made by young people? Could government and employers enforce fairness? (The media is probably the worst, most judgmental, least forgiving entity.)

An approach to children’s digital footprint must be broader than the tech community, yet the burden cannot be placed on parents to oversee every letter typed in and every picture posted. Engaging broader society in forming cultural acceptance of mistakes made publicly would help provide children with the ability to learn from mistakes. As things are, the costs are too high. Evolving viewpoints and regrettable outfit choices are a valuable part of growing up. Shaming based on public disclosures that used to be private (unless someone snapped a picture and used it years later to incriminate) should not be tempting to adults. Adults engaging in virtue signaling exacerbate the issue, yet perhaps they can be rebranded as bullies.

feature Photo 85888318 © Marcel De Grijs | Dreamstime.com