An Update: Antiracist Bioethics

 Hello world, 

A lot has changed since the last post on here over five years ago. On a personal note, I aged out of my own blog, went to law school, got married, and changed my name. However, I'm still the same in some ways as when I started Bioethx Under 25, primarily in that, I am still invested in encouraging young people such as students and/or amateur philosophers of any age to engage in bioethics as a discipline through informal discussions, writing, and reading. I started this blog as a space for people who were not necessarily experienced enough to publish academic writing, either by age, study, or profession. The goal was to publish on the blog writing that was researched and well thought-out that might at times push the boundaries of what would be considered formal, academic bioethics. 

I believed in this project because I believed (and still do) that while bioethics is an academic discipline, it is also about our everyday lives and rigorous engagement with bioethical topics and literature can be for everyone. I stopped running the blog due to a slow-down in submissions and interest generally from my peer circle and changing priorities as I myself left the formal discipline and could no longer promote or edit it. However, I have happily left it up as it was, somewhat frozen in time both because I genuinely think the pieces by many writers are valuable and this blog serves as a recording of their effort and ideas. If you yourself are interested in bioethics or writing about it, please do look through these posts and see if something interests or inspires you. 

I decided to write this update because yesterday I launched a new project, an Instagram account called Antiracist Bioethics, which creates a space for engagement and dissemination of information on bioethics concepts through the lens of antiracism. Since Bioethx Under 25 was up and running, the Black Lives Matter Movement, Me Too Movement, LGBTQI Rights and fights for equity and solidarity against racism, white supremacy, patriarchy, ableism, and inequality have grown in volume and especially through the use of social media. While the racially disproportionate impact of harm from failures in medicine, healthcare, research, incarceration, policing, and climate change are not new at all, bioethics as a discipline has not acknowledged and reckoned with these realities enough. 

Antiracist Bioethics will include and amplify scholars and students already doing antiracism work in bioethics, elevate bioethicists of color, and promote all bioethics topics and research that evaluate and comprehend impact on racial minorities, particularly Black, Indigenous, and Hispanic or Latinx communities. The sheer diversity of these experiences, especially when considered intersectionally with gender, gender identity, sex, and sexual orientation, demonstrate the great wealth of material available to explore as researchers, amateur bioethicists, and just as people living on this planet in this time.

Ultimately, bioethics as an applied ethical discipline aims to evaluate our ways of living, being healthy, conceptions of bodies and experience, and relationship to the world around us. Without interrogating colonial, imperialistic, and white supremist underpinnings of the institutions and concepts that are being analyzed there will always be parts of the picture missing. If any of this interests you, please follow me on Instagram @antiracistbioethics and continue the conversation. Thank you for reading. 

Sincerely,

Mohini P.B. Rarrick

When You Are the Product and The Product Is Research

By Tim Rubbelke 

In mid-2014, researchers at Cornell University released a study titled “Experimental evidence of massive scale emotional contagion through social networks.”  The general idea of the study was that manipulating the Facebook feeds of users to display either primarily positive or negative posts caused subjects’ mood to shift accordingly.[1]  The study involved over 600,000 individuals.

Soon after the study was published, tech websites took notice.[2]  One of the obvious questions was whether the study participants had consented and whether they knew they were part of this study.

Facebook pointed to a broad clause in its “Data Use Policy” (DUP) as implying consent (although it seems no one in the study was aware of their participation.)  Some sites questioned whether the clause in question was even in the DUP at the start of the experiment.[3]

In light of the criticism, the Proceedings of the National Academy of Sciences (PNAS) (the journal that published the research) issued an Expression of Concern about the study.[4]  In it they noted that Cornell’s IRB chose not to weigh in on the research because the data their researchers received was anonymized and thus it was not human subjects research under the regulations.

While Cornell’s decision likely fits the technical description of the human subjects research regulations, it serves to highlight a very interesting question: when researchers (and institutions) receive data, should they be concerned about how the data was collected?

One hopes that Facebook carried out the experiment in an ethical manner, but without oversight we cannot be sure.  It certainly seems that at the very least many participants were subjected to a form of harm—by having their moods unknowingly altered to be sadder.  Perhaps more disturbingly, the study gives no indication of what would happen if a participant’s emotions swung far beyond the expected range.[5]

The rules and regulations surrounding academic research are designed to hold it to a high ethical standard, especially regarding the treatment of human subjects.  When data is shared between academic institutions then the research will be subject to the oversight of at least one institution.  In the case of data from private sources (such as Facebook) things are substantially murkier.  As the PNAS expression of concern noted, privately funded organizations like Facebook do not have to follow the Common Rule.  This is compounded by the fact that, as saying on the internet goes, “If you’re not paying for it, you are the product.”[6] Still, as one expert interviewed by CNet pointed out, the experiment carried out by Facebook went beyond the normal types of platform and advertising enhancement most websites carry out.[7] Furthermore if academic researchers are going to accept data from privately funded entities, and wish to maintain the high ethical standards, they should be cognizant of how the data was collected.

As Kahn, et al. note, it’s inadvisable to try and shoehorn a 20^th century research regulation apparatus onto a 21^st century world.[8]  And yet, as we try to bring the research oversight into the modern world we should be careful not to discard bedrock principles either. After all, public trust in academia is what fosters participation in research.

Tim Rubbelke is a PhD Candidate at the Saint Louis University Albert Gnaegi Center for Health Care Ethics. He contributes regular pieces on research ethics. 

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[1] http://www.pnas.org/content/111/24/8788.full.pdf

[2] http://www.cnet.com/news/facebooks-mood-study-how-you-became-the-guinea-pig/

[3] http://www.cnet.com/news/facebooks-emotion-manipulation-study-faces-added-scrutiny/

[4] http://www.pnas.org/content/111/29/10779.1.full

[5] Additionally there’s no information about the age of the subjects.

[6] http://lifehacker.com/5697167/if-youre-not-paying-for-it-youre-the-product

[7] http://www.cnet.com/news/facebooks-mood-study-how-you-became-the-guinea-pig/

[8] http://www.pnas.org/content/111/38/13677.full

Semio- or Semi-ethics: Semioethics for Animals?

By Matthew Cuffaro 

Semiotics (the study of signification) has a deep tradition for universalism. A deeper tradition in thought is the concession that humans hold a special place among lifeforms as “conscious,” and semiotics is no different. In Sign Crossroads in Global Perspective, the authors Petrilli and Ponzio argue that if humans are conscious of the significance of things, then they are responsible for their signification, curtailing polluting or destructive cultures and practices in favor of “planetary semiosis [process of signification]” (the analogue of the “Spaceship Earth” idea you might have heard about). Petrilli and Ponzio define semioethics for us:

“…1) invent a plurality of possible worlds; 2) to reflect upon signs; 3) to be responsible for one’s actions; 4) to gain conscious awareness of our inevitable involvement, of each and every one of us, in the sign network of life over the entire planet; and 5) to be responsibly involved in the destiny of planetary semiosis.” (3-4, Petrilli and Ponzio).

How does semioethics look in our day? For example, if I say “forest”, I denote the complex of trees that scaffold a rich ecosystem, but I can also expect to connote something in the listener that is met with a response. There might be stress: the listener that is familiar with the films Silent Running, Medicine Man, and Avatar is familiar with the disappearing forest—something invaluable, yet mercilessly exploited, yet something distant. There might be interest: the listener may be a logger who equates the forest with their income, or an ecologist who sees the forest as a complex of interdependent lifeforms. There may be religious or existential feelings to the listener that knows the forest to possess supernal power or sagacity, healing benefits, or the basis of their livelihood. Further still, the Puritan coming to the New World sees the endless forests as ripe with resource to be drawn from systematically through their labors. Through cultural and scientific influence, our example paints the forest as something once a symbol of innumerable economic plenty to something of indispensable ecological value. If we follow these trends, we imagine the forest as a “life support system;” something of personal and functional value, Thus, the forest is represented in a way that alters its significance to the people.

Now I believe Petrilli & Ponzio’s project is bioethical because they are both critical and imperative towards environmental practice, but their focus on the human is uncharacteristic of the contemporary trends in semiotics to extend its essentially pre-linguistic domain to lifeforms. If biosemiotics wishes to construct a basis for extending signification to (all) lifeforms, then can we depart from Petrilli and Ponzio to say that animals are in some way semioethical? Prima facie, this is absurd, because the hare does not have the logging companies, the socioreligious campaigns, NIMBY sieges on civic projects, etc.; what the hare has is grassy flatlands, abundant cellulose, and other “critters” that are supposedly significant to it.

The example I like is the “fable” of the Fox and the Hare. In the introduction to Jesper Hoffmeyer’s Biosemiotics (of which I paraphrase): A hare in a field becomes aware of a fox stalking close by. The hare stands up on its hind legs and the fox, seeing this, aborts its foxing and trots away. An ethologist reporting on this claims that the hare stood as a gesture to the fox that chasing it would be a waste of everyone’s time and energy. The meat behind this claim is that it does not argue that the behavior is instinctual. After all, brains are calorically very expensive so the ethologist believes that the hare’s act is an example of signification, or that standing up is a gesture invented by the hare to communicate.

What is possibly semioethical in this account of the fox and the hare is that the creative status of the hare’s gesture leads us to ask the status of consciousness of the hare, which leaves us with open questions. If the hare is communicating something to the fox, then does it recognize the fox as something that can respond or react to the gesture? Do animals of supposed creativity understand their intercommunicants as “animated threats” (how the heck does the fox appear to the hare)? If so, then can we attribute a variant of the semioethical capacity we attribute ourselves to an animal that is cognizant of the capacities of other animals?

Why is this semioethical account useful to us?

If we adopt a biosemiotic strategy of extending semiotics “globally,” then the ideal common system for describing things semiotically allow us to ‘approximate’ ourselves beyond scientific prejudice of an unchecked human exceptionalism—the notion that all “human” qualities are exclusively “human.” If we form through our inquiries the grounds for suspecting the rudiments of consciousness in other lifeforms, then we not only invite scientific interest to explore and validate these suspicions but confirm the deep intuitions of those who advocate for ecocentric (more like un-anthropocentric) thought.

Notwithstanding, it is problematic already for us in the political arena to attribute animal rights in the very least, but if we can extend an ethical basis to animals first, then we have the philosophical freight to carry these arguments further. We may look at the vegetarian pamphlets thobbing the horrors of factory farms through the animal anecdotes and praising soy diets, perhaps with Ryan Gosling’s testament in there for good measure (I’m looking at you, Vegan Outreach.). In these pamphlets chickens named Kevin, pigs named Emily, and fishes named Calvin are celebrated for their ability to solve puzzles, count, communicate and especially escape, yet the semioethical project underlying this is that these animals are worth something by their apparent human attributes. We should treat these arguments by not evaluating the animals by their humanness, but by the attributes that allows us to understand the intentions of the animal (or plant), at the threat that we continue to think “humanness” is superior to “animalness” and is a standard beyond the niche of our circumstances. In a more fundamental way, the semioethical problem I try to convey would, if realized, mark a step in the scholarly imagination: those who could peer into the eyes of the rabbit peering into the fox, or to surject themselves onto the mind of the plant.

Matthew Cuffaro is a philosophy student at the University of South Florida with a concentration in the philosophies of mathematics and religious studies. 

Religious Values and Refusal of Highly Effective Life Saving Treatment by Minors

By Michael DiStefano

Caring for children with life-threatening illnesses is very difficult for both parents and health care providers. The experience can be even more painful when the child refuses highly effective life saving treatment (HELST). Most states have “mature minor” statutes or case law that recognize the rights of children with demonstrated decision-making capacity (and who are usually older than 14 years) to make decisions about their health care as a legal adult, regardless of the wishes of their parents or providers. Two notable examples are Dennis Lindberg, a 14-year-old Jehovah’s Witness who died from leukemia after refusing a blood transfusion, and Benny Agrelo, a 15-year-old who died after refusing to continue taking immunosuppressants following two liver transplants. In each case a judge declared the boy a mature minor whose medical decisions must be respected.

However, the standard criteria for determining whether a minor has capacity are only likely to be adequate in the case of minors who invoke non-religious values to refuse HELST. I will argue that, though controversial, heightened scrutiny ought to be applied when minors justify their refusal with religious values. It therefore may have been wrong to treat Dennis Lindberg and others like him as mature minors.

In general, decision-making capacity rests on four conditions: (1) the ability to communicate a choice, (2) an understanding of the facts and information related to the choice, (3) an appreciation of the situation and its consequences, and (4) the ability to rationally manipulate the relevant information and to reason about treatment options.[i] These criteria ensure that a minor’s decision is valid in the logical sense. They require the minor to clearly state premises (i.e., subjective value statements and objective medical facts) that logically entail the truth of a clearly stated conclusion (i.e., whether to accept or refuse some treatment). Crucially, none of the criteria requires that the conclusion be philosophically sound. If so, we would need to be able to objectively determine whether all of an individual’s premises are true, in addition to the objective medical facts. However, because value statements are subjective, capacity determinations cannot require that minors’ decisions be sound if they are motivated by a desire to respect patient autonomy.

Still, merely valid decisions lack a critical component, namely, whether minors themselves genuinely believe their stated value premises. Some will object by noting that people generally do not state things they do not believe, especially when making high stakes decisions like whether to refuse HELST. However, this additional consideration is intended precisely for the admittedly rare circumstances in which minors express value premises with which they do not genuinely agree—knowingly or not—as a result of coercion or social pressures. These circumstances are worrisome because attempts to respect minors’ autonomy by granting mature minor status should not instead enable circumstances that have already compromised autonomy.

Patients who invoke religious values to refuse HELST are more likely to have experienced coercion or social pressures than those whose refusals rest on non-religious values. First, the stakes associated with religious values are more coercive than those associated with non-religious values because there is more to be lost by failing to uphold religious values. Religious values are often linked to absolute gains or losses. Eternal salvation often depends on whether one has lived according to the dictates of one’s faith. Non-religious values lack similar stakes. Of course, the repercussions for failing to honor non-religious values (e.g., moral distress, disappointment of loved ones, ostracization) are significant, but cannot compare to the gain or loss of something with infinite value like eternal life-after-death.

Second, religious values are frequently cultivated within tightly knit communities of like-minded individuals. The disappointment of loved ones and ostracization felt by those who fail to honor religious values are likely to be more acute than that felt by those who flout non-religious values. Of course, non-religious values are also inculcated within communities, but modern communities, especially those in Western liberal democracies, are pluralist in nature. Diverse communities are likely to tolerate a greater degree of divergence from value-based behavioral norms than homogenous religious communities that are typically the result of self-selection.

Third, young people are more easily influenced by their peers and other external pressures.[ii] Therefore, the religious values of minors active in religious communities are more likely to result from either a fear of absolute gains or losses or a desire to act in accordance with the expectations of those around them. Their religious values are less likely to be the result of their own considered and reflective deliberation.

Finally, education within religious communities is sometimes regulated (e.g., through home schooling or programs to complement public curricula) to limit access to competing views that may impact the values its adherents develop. Insofar as minors receive this regulated education, their religious values may be more a product of the views of their parents or community leaders than their own deliberation.

Returning to the cases introduced above, Dennis Lindberg, a Jehovah’s Witness, justified his refusal of HELST with the religious value that blood transfusions are contrary to the tenets of his faith. Per the traditional standards for demonstrating capacity, Dennis clearly articulated this value and logically demonstrated its relation to his refusal. However, the four reasons just discussed combined with the fact that his aunt—also a devoted Jehovah’s Witness—was raising him call into question how genuinely he believed the value. Benny Agrelo was not similarly influenced by religion.[iii] His refusal of HELST was based on the value that a shorter, but higher quality life is preferable to a more prolonged, but painful existence. He felt too sick while taking immunosuppressants to enjoy life. Benny’s parents initially held the opposite opinion,[iv] thus supporting the claim that non-religious values are less likely to be the result of social pressures.

When minors refuse HELST, providers should be especially mindful of the social forces that influence religious values. It is not enough to rely on the traditional criteria for determining decision-making capacity in these circumstances. Providers should engage more closely with these young patients, perhaps by adopting the deliberative model of the physician-patient relationship,[v] and do their best to ascertain how free they are from coercion or social pressures and how genuinely they believe their professed religious values. Similarly, the law should be revised with this heightened scrutiny in mind.

Michael is currently a Teaching and Research Assistant at the University of Pennsylvania where he recently completed a Master's degree in Bioethics. He graduated from Princeton University in 2011 with a degree in Religion and Philosophy. His research interests include religion and clinical ethics, the ethics of mobile health technologies and health incentives, and reproductive ethics. This post was chosen as a finalist for the 2014-2015 Daniel Callahan Young Writer's Prize. 

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[i] Paul S. Appelbaum, “Assessment of Patients’ Competence to Consent to Treatment,” The New England Journal of Medicine 357 (2007): 1834-40; Douglas S. Diekema, “Adolescent Refusal of Lifesaving Treatment,” Adolescent Medicine: State of the Art Reviews 22, no. 2 (2011): 213-28.

[ii] Diekema, “Adolescent Refusal of Lifesaving Treatment.”

[iii] Jonathan F. Will, “My God My Choice: The Mature Minor Doctrine and Adolescent Refusal of Life-Saving or Sustaining Medical Treatment Based Upon Religious Beliefs,” The Journal of Contemporary Health Law and Policy 22, no. 2 (2006): 233-300.

[iv] Ibid.

[v] Ezekiel J. Emanuel and Linda L. Emanuel, “Four Models of the Physician-Patient Relationship,” Journal of the American Medical Association 267, no. 16 (1992): 2221-6.

Point and Counterpoint: Vaccines

This piece and the one that follows, “The Paradox of Government Vaccine Mandates” by Tim Rubbelke, present a point and counterpoint in the current resurgence of debate over vaccines. The first, by Kristen Senetar, outlines the positives of maximum vaccination while the second examines the problematic nature of enforcing this notion.

By Kristen Senetar

If you’ve turned on the news lately, you’ve probably heard about the outbreak of measles in the United States. Although the infectious disease has been considered eliminated from the United States since the year 2000¹, more than 120 people have contracted it since the beginning of this year.² How could an outbreak like this happen when there is a vaccine to protect us from measles? Should everyone be required to be vaccinated?

Vaccines are used to protect us against numerous diseases: measles, mumps, polio and countless others. The two-dose measles vaccine, which is spread out over several years, is 97% effective.³ The protection offered by this and other vaccines has helped our world become a much healthier place. While not 100% effective, vaccines have saved countless lives by offering a great defense against diseases that can often turn deadly. They are a quick and easy way to protect yourself and your family from illnesses. So why wouldn’t every parent vaccinate their child?

Some people do have concerns about vaccines. Over the past decade, there has been a growing fear that vaccines are linked to autism. However, the 1998 article, which stated that certain vaccines increase the risk of autism has been proven false, retracted from the Lancet, and the author of the paper later lost his medical license.⁴ There are also some individuals who cannot be vaccinated due to medical conditions such as certain allergies or suppressed immune systems. However, this number of individuals who cannot receive vaccines due to medical reasons is significantly smaller than those who can.

Should everyone be required to get vaccinated against measles and other communicable diseases?

The short answer is yes, everyone should be required to get vaccinated for everything possible, as suggested by their doctor. Except for those who have a specific medical condition and those with religious objections, most Americans can receive all vaccines. It is essential that the majority of the population gets vaccinated because it will support herd immunity. This notion is essential to public health, stating that if the number of people who are vaccinated is significantly greater than the number of those who are not, the vaccinated population can essentially protect the unvaccinated population. However, as the unvaccinated group grows larger and larger, herd immunity becomes less and less effective. Therefore, it is crucial that those who can be vaccinated do so in an effort to protect themselves and others.

There are also some people who have religious objections to vaccines. While religious freedom is a valued good, parents’ choices to not vaccinate endanger their children. If they will not vaccinate their children, then perhaps alternative actions should be put in place during periods of outbreaks, such as not allowing them to go to school. If an unvaccinated child were exposed to a disease, like the measles, and went to school before realizing what they had, they would be placing everyone at their school at risk of exposure. Even though most vaccinated children would go unharmed, the vaccine is not 100% effective. Keeping unvaccinated children out of school during times of outbreaks would help protect both the vaccinated and unvaccinated population.

Medical conditions aside, is it ethical to require everyone to vaccinate his or her children? This can be answered using two of the ethical principles: beneficence and non-maleficence. Take, for example, a newborn baby named Joe. Joe hasn’t been exposed to the germs of the outside world, like the cold virus or measles. He begins his life by staying inside most of the time, only going out for short walks or trips to the doctor’s office. Shortly after turning one, Joe receives his first MMR vaccine, as suggested by his doctor. As he continues to grow, Joe receives all the suggested vaccinations and lives a fairly healthy life. One day, while on an airplane, Joe, who is now a teenager, unknowingly sits next to someone infected with measles. Since Joe received the measles vaccine, no harm comes from the situation and he continues to be healthy as he grows into an adult. This scenario supports the principle of beneficence because the vaccines helped keep Joe healthy and protected against disease.

Now, imagine the same child, Joe, had parents who decided, for non-medical or religious reasons, to not vaccinate him as suggested by his doctor. Joe grew normally, just like kids who did receive vaccines, and led a fairly healthy childhood. One day, Joe, who is now a teenager, got on an airplane and unknowingly sat next to someone who had the measles. Since the measles is a highly communicable disease and the two were sitting so close together, Joe was exposed to the disease. Joe, who never knew the person next to him had the measles, felt fine after leaving the airport but a few days later starts experiencing symptoms. In a matter of days, Joe grows very sick and ends up in the hospital. After several long days, Joe begins to feel better and finally makes a full recovery. While the outcome of a full recovery is the best case, Joe experienced unnecessary suffering and harm. Therefore, the decision Joe’s parents made to not vaccinate him violates the ethical principle of non-maleficence.

Overall, vaccines were created to protect us from harm. No medical intervention is 100% effective or 100% safe. Some people do experience reactions to vaccines, but the majority does not. For most people, vaccines offer a greater benefit than they do the possibility of harm. Medical conditions aside, it is our duty to protect others and ourselves from diseases like the measles by following medical guidance to receive vaccinations. Who knows, the life you save might just be your own.

Kristen is currently a Regulatory Assistant at the University of Texas Southwestern.  She received a B.S. from Butler University in biology with minors in mathematics and chemistry and a Master's in Bioethics from Case Western Reserve University.  Her interests in the bioethics field include genetics, vulnerable populations and the rights of the unborn.

^1,3 "Measles Vaccination." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 4 Feb. 2015. Web. 14 Feb. 2015. <http://www.cdc.gov/measles/vaccination.html>.

² "Measles Cases and Outbreaks." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 14 Feb. 2015. Web. 14 Feb. 2015. <http://www.cdc.gov/measles/cases-outbreaks.html>.

⁴ Caplan, Arthur. "There Is No Other Side to the Vaccine Debate." Chicagotribune.com. 13 Feb. 2015. Web. 14 Feb. 2015. <http://www.chicagotribune.com/news/opinion/commentary/ct-measles-vaccine-jenny-mccarthy-autism-ebola-perspec-0213-jm-20150212-story.html>.

The Paradox of Government Vaccine Mandates

By Timothy Rubbelke

Few aspects of medicine invoke so much disagreement among people.  Vaccines have fundamentally changed the way we think about illness.  Yet, they are still rejected by a surprisingly large subset of the population.  To ward off potential public health catastrophes we engage in draconian measures, including preventing school registration without proper vaccination.  In spite of this, lack of vaccination has caused a resurgence of diseases thought to be eliminated.  This begs the question: are the mandates working or could they actually be counterproductive?

Public Mistrust of Vaccination

Vaccination is the source of much public mistrust today.  No longer just an issue for fringe groups and religious objections, vaccination bashing has become embedded in popular culture through statements made by celebrities, most famously Jenny McCarthy.  Given that data shows vaccines to be incredibly safe and yet these groups still continue to gain followers, we should look at some of what animates them.

It seems easiest to connect the anti-vaccination movement’s beginnings with the now infamous study by Dr. Andrew Wakefield published in The Lancet in 1993.  A relatively small study, Wakefield concluded that the MMR vaccination caused damage to the intestinal system of growing children, which in turn resulted in more toxins getting into the blood stream, making them more susceptible to developing autism.[1],[2]  Ultimately the Wakefield study would be proven false, the connection between vaccines and autism thoroughly severed by science, and yet this idea remains an incredible concern for many, with some people going so far as to reanalyze CDC data to find a connection.[3]

The theory of dangerous vaccines gained even more traction when the CDC began looking into the possibility that thimerosal, the mercury-based preservative used in many vaccines, was linked to autism.  This potential danger appealed to common sense as well as scientific sense.  After all as Neal Halsey, one of the CDC proponents of removing thimerosal, reasoned: we are cautious about mercury levels in fish, doesn’t it make even more sense to be cautious about the levels in vaccines given to newborns and young children.[4]  Eventually thimerosal would be removed from vaccines, out of precaution, even though the scientific evidence was sparse regarding its effects, if any, on children.  But this resulted in a ripple effect of growing distrust against vaccines.  In turn, this would open the door for groups like the National Vaccine Information Center, an organization that claims to be neutral towards vaccines although it was founded by an anti-vaccination advocate and Generation Rescue, Jenny McCarthy’s charity, to gain credibility as experts on the national stage.[5]

Those with anti-vaccination beliefs are still very much a noticeable group.  Vaccination in some schools in California, for example, has dropped below 50%, with “Personal Belief Exemptions” sometimes outnumbering the number of vaccinated students.[6]  Yet something has to underlie this mistrust for it to continue to maintain a national presence.  I would suggest that the government mandates provide the backdrop which the anti-vaccination uses to gain traction in its fight.

Americans and their Freedom

Before beginning our discussion on vaccines specifically, it may be helpful to first discuss the importance of freedom for Americans.  Freedom, of course, is a broad and somewhat vague word.  When we speak of the American notion of freedom that is of interest here, we are referring to personal liberty, specifically civil liberty.  Civil liberty entails one being free from state interference, except, at the bare minimum, to ensure the public good. Consider as an example the recent pushback against the so-called “individual mandate” included in ACA.  Since the passage of the bill, there has been an outpouring of opposition towards it.  Some 27 states filed lawsuits seeking to have the mandate overturned on constitutional grounds, an argument eventually rejected by the Supreme Court, which declared the mandate a tax.  Ten states have passed various forms of legislation that attempt to overturn the mandate at the state level.  Two of these passed with crushing margins in public elections. One in Ohio passed with a double digit margin.[7],[8]  Similarly, an August 2011 poll of Americans showed that over 80% believed the government should not have this power.[9]  Regardless of one’s individual position on the matter, I think it could be argued it is not well received by the public.  But what does this tell us about perceptions of the government?  It tells us quite a lot.  It is not necessarily that these people are opposed to the idea of purchasing healthcare insurance or even of government helping to control health cost (statistically speaking, many of these people likely already purchase health insurance).  It is the very idea of government telling them that they must do something that seems to be the problem.

And so it may be with vaccines.  Simply put, it shows that Americans tend to reject what they see as an excessive reach of government which would repress autonomy, especially in issues of healthcare.  Thus we can begin to see that if vaccination is considered, at least by some, to be an overreach of government, the result can be distrust against it.

The Paradox

It should be noted that the intent is not to convince people at the far ends of the vaccine debate -- such a goal would be impossible anyway --  but rather to try to understand how one side, in this case the anti-vaccine groups, captures the minds of those in the middle.  Having said that, we can now see how the mandates might actually be counterproductive to encouraging widespread vaccination.

All conversations about the merits of vaccination must now take place against the backdrop of government mandates and power.  This allows members of the anti-vaccine movement to place these mandates in contrast with the American liberty narrative during any discussion, fostering distrust in government and convincing people of their cause.  Considered alone, the mandates might not cause much of a problem.  After all, they have existed for some time before vaccine rates started to decline, but we must also consider that we’ve developed what might be called “societal amnesia” with regards to many of these diseases. For my grandparents, concerns about polio saturated their lives, and yet many people from my generation have never even seen a polio victim beyond clips of Franklin Roosevelt.  This leads people to erroneously conclude the vaccines have no actual benefit, further reinforcing the idea of an overbearing government.  However, if the vaccine mandates were dropped, this would take away one of the key pillars of their argument. The movement would no longer be able to frame the debate in terms of a battle between personal autonomy and an overzealous government.

Of course the obvious potential fallout from such a maneuver would be that vaccines now have to stand (or fail) on their own merits.  However, not all hope is lost.  In eliminating the vaccine mandates, we will also have severed the connection between doctors and the state, at least to some extent. As such, the trust between the patient and physician, as well as the trust between medical science and society, can be allowed to grow without being poisoned by an overarching political discourse.

There is still a potential danger in rolling back vaccine mandates.  We risk a short term drop in vaccination.  But it’s not clear that this would be any worse than where we are now, with significant numbers of people opting out for dubious reasons, and old diseases (whooping cough, measles, etc.) making their rounds once again, even with mandates in place.

Tim Rubbelke is a PhD Candidate at the Saint Louis University Albert Gnaegi Center for Health Care Ethics. This essay was chosen as a finalist for the 2014-2015 Daniel Callahan Young Writer’s Prize. 

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[1] Goldberg, R. (2010). Tabloid medicine : how the Internet is being used to hijack medical science for fear and profit. New York: Kaplan Publishing.

[2] Interestingly, this is not the actual conclusions of the paper, but it is how Wakefield portrayed them in his numerous interviews following the publishing the study.

[3] Expression of concern: measles-mumps-rubella vaccination timing and autism among young African American boys: a reanalysis of CDC data. (2014). Translational Neurodegeneration, 3(1), 18. doi: 10.1186/2047-9158-3-18

[4] (Goldberg, 2010)

[5] (Goldberg, 2010)

[6] California makes for an interesting case study because it is one of the few states in which the PBE’s allow for “philosophical” objections as well as the commonly held religion based objections.  The interpretation of PBE’s is broad allowing almost anyone to get a waiver.

[7]  Ohio Votes to Nullify Insurance Mandates. (2011, November 8).   Retrieved November 13, 2011, from http://www.tenthamendmentcenter.com/2011/11/08/ohio-votes-to-nullify-insurance-mandates/

[8] Cannon, M. F. (2011, November 9). Ohio’s 2-1 vote against the individual mandate is a wholesale rejection of ObamaCare.   Retrieved November 13, 2011, from http://www.cato-at-liberty.org/ohios-2-1-vote-against-the-individual-mandate-is-a-wholesale-rejection-of-obamacare/

[9] GfK Roper Public Affairs & Corporate Communications. (2011, August). The AP-National Constitution Center Poll. from http://surveys.ap.org/data/GfK/AP-GfK%20Poll%20Aug%202011%20FINAL%20Topline_NCC_1st%20story.pdf