Pseudoscience and Measles in Minnesota

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

By Hannah C. Giunta, DO, PhD, MPH

A recent measles outbreak in the Minneapolis-St. Paul, MN metro area is all over the news. More than thirty children have been treated at local hospitals, and at least 50 measles cases have been confirmed. The local Somali immigrant community has been hardest hit in large part due to their low vaccination rates. Commentators have demanded a variety of measures to control the vaccine-preventable disease, including enhanced border security. However, there has been less coverage of the outbreak as evidence of systemic social injustice.

Indeed, no matter what ones views are on compulsory vaccination, Somali parents’ vaccine refusal is not a case of informed, empowered parental choice but one of disadvantage and exploitation. The Somali immigrant community has been targeted by anti-vaccine activists spreading scientifically suspect information. Activists have taken advantage of an as yet unexplained increased rate of severe autism (but not autism in general) in the Somali community, encouraging parents not to vaccinate while spreading long debunked claims about the link between vaccination and autism. Realizing that internet rumors were not effective, activists have taken to personally visiting families and warning them about the dangers of vaccination. Yet, there is a real temptation to place some of the blame for the epidemic on Somali parents. Even commentators who rightly place blame on the anti-vaccine activists and declare the situation quite literally “a natural experiment” do not take the extra step of calling activists what they really are: gamblers and fraudulent pseudo-scientists willing to bet on the lives of disadvantaged children. This is not a case about free speech or poor parental decision-making; rather, it is a case of advocates conducting a so-called “natural” experiment where they stand to possibly gain the benefits (i.e. possible support for their cause) without taking on or acknowledging any of the risks faced by their subject-victims. The activists are guilty not just of being ill-informed and having dubious goals but also of perpetrating a larger social injustice.

While people certainly have the right to free speech and we all have a responsibility to evaluate the information presented to us, anti-vaccine advocates in this case chose to target a vulnerable population and to take advantage of individuals’ lack of empowerment. Of course, they did not set out to conduct a classic scientific experiment, but they are certainly still guilty of participating in a type of experiment. Some might say that the activists were just trying to help Somali families because they sincerely believe in a link between autism and vaccination. Others would argue that these individuals are not qualified scientists and were not performing research. But, the activists’ project was more devious than misinformation. The activists sought to target a minority community, take advantage of a medical puzzle, keep community members in the dark about their true objectives, and to recruit participants into a risky gamble where “benefits” primarily accrue to the activists themselves. After all, if the activists could point to any decline in the autism rate (regardless of causation) or show the public that vaccine-preventable infections are simple childhood illnesses from which children recover without incident, they would have more “data” to support their cause. The very fact that parents believed the activists likely lent more credibility to the anti-vaccine crusade in populist minds. If enough people believe the message, surely there must be something to it?

Image description: a baby is in the hospital with measles in the Philippines. Image source: CDC Global/Flickr Creative Commons

The social injustice implications of a pseudo-research paradigm come into focus when we consider three major aspects of the case in question. First, the activists exploited their own relative privilege by providing biased information. There is no way that individuals engaged with the anti-vaccine campaign are unaware of vaccine-preventable diseases and the risks they present. They simply choose not to focus on those risks. They so strongly support their own hypothesis that they believe it to be true despite evidence to the contrary, much like a researcher might believe that nothing could possibly go wrong in an experiment. Anti-vaccine activists usually have access to many sources of information and thereby a certain degree of epistemic privilege. They have socioeconomic resources to travel to ethnic enclaves and meet with Somali families. On the other hand, the Somali community in Minnesota continues to struggle with poverty, unemployment, and related social ills. Somali children are already at-risk for poorer health outcomes, but the activists did not consider this relative health disadvantage.

Secondly, the activists maximized their own benefits while placing all of the burdens on the Somali children. The segregation of poor Somali immigrants into certain ethnic enclaves virtually insures that children, including the activists’ children, outside these neighborhoods face much less risk of illness. Should there be a serious outbreak, Somali children would bear the burden, not the activists’ children. The Somali community would also be blamed for not vaccinating their children, absolving the activists’ of responsibility through a leveraging of their privileged social position.

Lastly, even with obvious evidence that the Somali community is suffering a measles outbreak, activists have failed to reach out and attempt to retract their message. Their pseudoscientific project continues unabated. They cloak themselves in the language of science while allowing a natural experiment to run wild and harm innocent children. Clearly, they believe their agenda and hypothesis about autism causation are more important than the lives of innocent children. Measles does kill, and over 30% of children will experience one or more complications, including diarrhea and dehydration, pneumonia, and encephalitis. Perhaps, if anti-vaccine crusaders wish to engage in pseudoscience, we should hold them to the standards and responsibilities of real medical scientists, including the wrongful death of any children who succumb and the continuing expense of measles-related complications. You can’t yell “fire” in a crowded room if there really isn’t a fire, and activists have crossed a line and are doing just that. We, in the name of equitable health outcomes, need to remind activists that words do matter and their experiment has failed.

hannah-giunta-2017-cropHannah C. Giunta is a May 2017 graduate of the Michigan State University DO-PhD program. She received her MPH in May 2015 and her philosophy PhD in May 2016. Dr. Giunta is an incoming Mayo Clinic Pediatrics Resident.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 1, 2017. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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Vaccination, Free Riders, and Family Autonomy

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

By Jamie Lindemann Nelson, PhD

Still rather spent from an intense bioethics workshop in Germany the weekend just past, it was through a bit of a lingering haze that I glanced at the New York Times editorial page for the 21st of April. What attention I could muster was caught by the bottom of the page—“Vaccine Phobia in California.”

I can usually count on the Times Op-Ed writers to be on the side of the angels (as I make it out) and this time seemed no exception. Commenting on legislation pending in the California legislature that would remove exemptions from vaccination on the grounds of a parent’s “personal belief” that vaccines might harm children, the editorial briefly but effectively supported the bill. Considering it obvious that vaccines are safe and effective, the Times writers stress that near-universal vaccination is key to maintaining reliable herd immunity against a range of serious illnesses.

Herd immunity is crucial to those who cannot undergo vaccination for medical reasons, and for whom vaccines are ineffective. Yet it is imperiled particularly in California, where the rate of “philosophical” (i.e., personal belief-based) vaccine exemptions has more than tripled since 2000, and which is, not incidentally, the site of the recent Disneyland measles outbreak.

Perhaps what was left of my jet lag was to blame, but the editorial didn’t prompt the indignation at “anti-vaxxers” I have typically felt when confronting their willingness to put children at risk on such flimsy grounds. I’m inclined to think, though, that a recent lecture by a Harvard pediatrics professor, Dr. Claire McCarthy, may be the cause of my somewhat more conciliatory inclinations (McCarthy 2015).

There should be no confusion about Dr. McCarthy’s pro-vaccine views. However, she is also a thoughtful scholar. During her lecture, she spoke of a healthy child who had a routine inoculation. Very sadly, the child had an extreme reaction; shortly thereafter, he was dead.

The tragedy of a child’s death can hardly be overstated. Yet the odds of any given child dying from a vaccination are miniscule, and parents expose their kids to miniscule mortal risks every day, and sometimes pretty whimsically—think of the last time you buckled your toddler into her car seat for a quick drive through snowy streets to pick up the evening’s wine.

Still, imagine a parent reasoning like this: “I don’t live in California; my community isn’t full of people who won’t vaccinate their kids. And I know there’s no evidence for a link between vaccination and autism. What I’m scared about is Dr. McCarthy’s story. In my town, I can count on robust herd immunity. Why, then, should I expose my own precious child to even a very small risk of death when I don’t need to? She’ll be fine so long as we keep an eye on the vaccination rates wherever we live or visit.”

There’s an obvious reply: this plan is plainly unjust. It allows her family and her child to benefit at the expense of other kids who have undergone the same very small risk this parent rejects, in order to secure the herd immunity on which she relies. Her “justification” seems a textbook example of “free riding.”

Yet families are a curious kind of social institution. Small-scale, and typically intimate associations in which much important work of personal identity formation and maintenance goes on, they make up a centerpiece of the most important part of many people’s lives. To perform their special functions well, they are widely recognized as requiring some degree of insulation from some of the moral norms that people are expected to follow in their dealings with strangers and acquaintances.

Justice is often seen as one of those norms whose full force gets a bit diluted in families. For example, families are routinely allowed to pass along from generation to generation resources, training, and traditions that may well entrench social inequalities; many conceptions of justice see those inequalities as indefensible. In a fairer world, we mightn’t be suffered to favor “our own” to such an extent. Yet many would reply “so much the worse for fairness.”

Utilitarians may sigh and deontologists scold, but people typically don’t think that the moral claims of strangers are as significant as are those of family; that just seems part of what it is to love some people and not others. The “free riding” charge may be simply another departure from general moral norms allowed by what many theorists have called “family autonomy.”

Of course, if you can’t get a philosophical exemption, there’s always the option of homeschooling. Yet I’m coming to think this response is rather draconian, at least absent a more pressing public health emergency. Not all parents can responsibly educate their children through high school, and what the children of such parents might miss could impair them in ways far more serious than a typical case of the measles.

There seems a less confrontational option—gentle persuasion based on clearly presented facts. The Times Op Ed concedes this very point, noting that the rate of unvaccinated kids in California schools declined during this school year, due to a “new requirement that parents speak to a licensed health care professional about vaccines and the risks of not getting vaccinated.” (New York Times, April 21, 2015, p. A 22.)

Yet not all observers have the Times’ confidence in education. Last April, Pediatrics published a study entitled, “Effective Messages in Vaccine Promotion” (Nyhan, et al. 2014). Almost 1800 parents were randomized to either a control group, or to one of four types of pro-vaccine messages: information debunking the vaccine-autism link; messages about the dangers of measles, mumps and rubella; images of children who have those diseases; a dramatic story about a child who almost died of measles.

The study’s take-home lesson? None of the messages increased parents’ inclination to vaccinate. Some of them actually made matters worse. Nor does the study address our imagined parent who fears, not autism, but the tiny chance of vaccination-induced death.

If education won’t work, is there anything short of coercion available? A study by Douglas Opel and colleagues (Opel, et al. 2013) found that presumptive, rather than participatory language and behavior on the part of health care professionals increased compliance. The trick is to treat vaccination as the standard expectation, and if parents demur, to respond along the lines of, “Look, Mary really needs these shots.” If parents object strenuously, they’ll not be overridden, but that is a very different matter from encouraging engagement in decision-making.

While there’s a good deal to argue about here, I think that presumptive approach to vaccination may be on balance defensible—it can help secure herd immunity against damages caused by dissenters, whether they mean to free ride, or simply don’t believe that shots do anyone any good, thus saving some children and parents a good deal of anguish. It doesn’t ride roughshod over the deep convictions of people implacably opposed to vaccination. It simply treats as a routine matter what should be seen as a routine matter, in a way analogous to letting science teachers determine that evolution structures the curriculum.

Admittedly, the presumptive approach hardly seems strictly in keeping with the gospel of informed consent and respect for autonomy, whether of individuals or of families. But strict fundamentalism doesn’t seem to me to be a more attractive policy in bioethics than in religion.

  • McCarthy, C.  2015. A Sticky Decision. Lecture, Harvard University Medical School, March 19.
  • New York Times. 2015. Vaccine Phobia in California.  April 21, p. A 22.
  • Nyhan, B., et al. 2014. “Effective Messages in Vaccine Promotion.” Pediatrics (doi: 10.1542/peds.2013-2365)
  • Opel, D., et al. 2013. “The Architecture of Provider-Parent Vaccine Discussions at Health Supervision Visits.” Pediatrics (doi: 10.1542/peds.2013-2037)

jamie-nelsonJamie Lindemann Nelson, PhDis a Professor of Philosophy in the College of Arts and Letters at Michigan State University.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Monday, May 11. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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