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.

References
  • 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. http://nyti.ms/1Dus1zT
  • 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.

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9 Responses to Vaccination, Free Riders, and Family Autonomy

  1. Mark Navin says:

    Thank you for these reflections, Professor Nelson.

    I think I agree with most of what you say, but I wonder if you’d say a bit more about what you think about requiring parents to attend vaccine education sessions as part of a vaccine waiver application processes. As you mention, California requires these education sessions, but, as of January 1st of this year, many counties in Michigan do, too.

    It’s not clear to me whether Nyhan et al 2014 tells us much about what to expect from in-person education sessions. This study provided people with online text and images, but it didn’t involve any dialogue (or occur in the context of ongoing relationships). And I suspect that this affected the results of the study. It makes me think of the many pediatricians who allow vaccine refusers to stay in their practices: Over time, these pediatricians often succeed in convincing vaccine refusing families to vaccinate against at least some diseases.

    Second, I wonder how you think Opel et al 2013 might bear on vaccine education session that are part of vaccine waiver application processes. In this context, there is clearly a strong presumption that parents are going to get a waiver — that’s why they scheduled the education session. But perhaps there are ways to diminish this presumption, e.g. by requiring parents to bring their children to these sessions or by being prepared to vaccinate children on-site if parents change their minds. Or perhaps the presence of especially strong-willed and well-prepared public health educators will be sufficient to make a difference.

    Finally, I’m not so sure how relevant the ideals of informed consent and patient autonomy are in the context of childhood vaccine (waiver) policy. Young children cannot generally provide informed consent (or act autonomously) and the fact that their parents object to their children’s medical treatment seems like an easily defeasible reason to permit vaccine refusal. But more importantly, I don’t think of vaccination primarily as a personal medical treatment, given the other-regarding aspects of vaccination – preventing harms to others and contributing to public goods. So, I’m not so worried about whether presumptive decision-making models compromise informed consent and patient autonomy when it comes to vaccine (waiver) policy.

    Again, thanks for what you’ve written. I’m looking forward to hearing more about what you think about these issues.

  2. Jamie Nelson says:

    Thanks, Professor Navin, for this thoughtful response, which nicely provides an opportunity to develop the ideas in the post. About Nyhan and colleagues: I think their work stands as a caution about being too sanguine about seeing vaccine resistance simply as a matter of the contents of what parents believe–as though replacing bad beliefs with good ones will do the trick. The factors that motivates people to acquire, retain, and act on their beliefs, particularly in the face of authoritative challenges, are complex and varied, and not so well understood as they might be by health educators (and maybe by educators in general). There is, as you note, evidence that some educational interventions can have the desired effect; a study comparing those that do with Nyhan et al.-type results might be helpful.

    Or, we could deemphasize the search for better techniques of rational persuasion, and rely more on mobilizing deference to authority, or the mystique of the clinic, of just reinforce inertia in the face of plain defaults, or whatever are the mechanisms at play in Opel’s work. I think this stragegy is defensible, particularly as an option less intrusive than other possible responses such as exclusion from public education, and I would be interested in seeing protocols for how it might work in vaccine education settings of the kind you mention.

    I’m a trifle less comfortable than I believe you are with seeing as impertinent considerations of what I call in the post “family autonomy.” We empower parents to make all kinds of consequential decisions for their kids, including decisions that collectively can have great impact on the lives of people outside the family, and including as well lots of decisions that I think are flatly terrible. Yet ‘m dubious about there being ready and realistic alternatives to some degree of deference to parentail decision making that would on balance be better. In my view, “secular” expertise–whether about vaccine risks and benefits or what we teach kids about climate change or the origin of species–is entitled to a strong presumption in its favor in public life. But what magnitude of threat a family decision might pose to outsiders before it becomes reasonable to intervene is, i think, a tricky matter.

    Thanks again for engaging with my remarks. I’m very much looking forward to reading your own forthcoming book on this issue

    • Mark Navin says:

      Thanks for these helpful replies, Professor Nelson!

      I think I appreciate the importance of some degree of family autonomy (though I should certainly read more about this, including some of your work). And I agree that it’s likely to be tricky to figure out what can defeat the presumption in favor of family autonomy. But I’m not sure how to think about family autonomy in the context of contemporary vaccine policy.

      If California passed a law that compelled parents to vaccinate their children, that would clearly raise questions about the rights of families to decide how best to raise their children. But CA is not going to do that. Instead, we’re talking about whether the state may place various burdens on parents who don’t allow their children to be vaccinated, and in particular, whether the state may exclude unvaccinated children from state-recognized schools and daycares. Actually, the discussion is even more removed from the act of vaccination than that: Contemporary debates about nonmedical exemptions focus on the burdens states may place on parents who both (1) refuse to vaccinate their children and (2) want to have their unvaccinated children attend state-recognized schools. But it’s not so clear that this involves the state in the sorts of direct interventions in family life that ought to be prohibited by family autonomy.

      I need to think some more about this. Thank you for the chance to get started!

  3. Jamie,
    Thanks for your thoughts on personal-belief exemptions (I never use the term “philosophical” exemption since it’s an obvious misuse of the term!) and the free-rider problem. Your gesture towards family autonomy is quite useful, as it allows a framework for discussing vaccine resistance without the usual accusations of selfishness. There are so many reasons parents refuse some or all vaccines—a risk perception calculus, for example, that magnifies the risks associated with vaccines. Nothing selfish about that decision.
    In most contexts, the protective inclination of parents towards children is thought of as a good thing. Yet in the vaccine debate, it amounts to selfishness in the vaccine debate.
    I argued in a paper (which is forever in=press but available on academia.edu if you’d like to read) that vaccine skeptical parents are merely being the attentive health allies that public health and institutional medicine have encouraged them to be as more health work is downloaded onto the individual.
    Jennifer Reich, a sociologist, situates vaccine hesitancy and refusal within the norm of “intensive mothering” now burdening middle class moms like myself. Childcare is supposed to be hard work! Decisions made in the best interest of the child are not supposed to be made easily! Parents search for information because that’s what informed consent dictates. But more internet searching on vaccine safety raises doubts rather than calms those fears.
    Indeed, social justice is often impeded with the inward focus on the family. But the charge of free riding suggests rational agents looking to maximize personal benefits at the expense of others. This does not appear to be the case here. Hope to see more writing on family autonomy and vaccine choice.

  4. (Now reading the comments by Mark and Jamie) You might consider the work of Saad Omer, who similarly suggests that parents should receive counselling from a HC professional before being granted a personal belief exemption. But he does not make any claims about the possibility of persuasion. Instead he has the empirical evidence to support the claim that more bureaucratic obstacles to gaining vaccine exemptions — needing to get a waiver notarized, needing to write a detailed letter explaining one’s reasons for vaccine refusal, etc.–results in far fewer people pursuing that option. Such “nudges” seem consistent with democratic choice and will lower exemptions without garnering garnering the kinds of political backlash one expects with stronger measures like mandatory vaccination for school-entry.

    • Mark Navin says:

      Hi, Maya. It’s good to see you here!

      From what I’ve read, burdensome waiver application processes can dramatically decrease the number of parents who apply for waivers (by 30-50%, I think). This is primarily because fewer people apply for waivers when they are harder to get. But if the value of vaccine education sessions is that they are burdensome on parents — rather than that they change people’s minds — then I wonder whether there are other ways to make the waiver process burdensome that don’t require health officials to waste time talking with parents. Perhaps people who want exemptions should be forced to pay a fine or to do community service? Or maybe we could increase their civil or criminal liability for causing infections (as Caplan and others have argued)?

      It may seem less coercive to require someone to attend an education session than to pay a tax or to take on increased liability. Persuasion may seem less coercive than taxation. But if the education sessions decrease vaccination rates because they are burdensome (rather than because parents who attend them are persuaded), then there may be nothing intrinsic to the education sessions to commend them. Instead, perhaps we ought to find less costly ways to generate burdens that are significant enough to lead to the desired reductions in waiver rates.

      I’m still open to the possibility that vaccine education sessions can be structured in ways that lead a non-trivial number of parents to change their minds. But even if that’s the case, there still might be better ways to decrease waiver rates than having health professionals complete (perhaps) hundreds of fruitless meetings with parents.

  5. Jamie Nelson says:

    Just wanted to apologize for letting this interesting thread go cold–end of term plus computer problem (now happily resolved) not a nice mix. Also, I wanted to thank Prof. Maya Goldenberg for joining the conversation with Mark and me (and acknowledge her forthcoming book on ethical issues surrounding vaccine policy as well!)

    Having already confessed my willingness to allow other than pristine efforts at rational persuasion into the mix of efforts to increase vaccination rates, this might seem mere quibbling. But I am inclined to think that there’s something to be said for the effort to educate–which would certainly involve attention to those studies that indicate the ineffectiveness of common strategies for doing so, and which also should surely incorporate pro-vaccine advocacy and nudges insofar as they help. All else equal, there’s something gained in not punishing people if avoidable. I appreciate Kant to the contrary, but I’d still prefer not to contribute to parents feeling alienated from heath care, and from their society as well. (There’s plenty of reason for plenty of people experiencing that already). I don’t know how great the incidence of defection from vaccination needs to occur before such costs become reasonable or even obligatory to bear, but I suspect that it is a non-zero amount.

  6. amongove says:

    Thanks to Prof. Jamie Nelson and colleagues for this much needed reflective conversation on vaccine controversies. Professor Nelson has done great service by bringing two issues out from between the lines, where often left, for explicit philosophical consideration: (1) tensions that can exist between patient- and community- oriented risk/benefit calculations for vaccines, and (2) certain moral arguments against vaccine-resisting parents. While I disagree with her conclusions, her transparent philosophical argument helps me to clarify my own views in response. Although I haven’t yet read Claire McCarthy’s and Maya Goldenberg’s pieces, both are now high on my list!

    I am a parent. I have public health and bioethics training. My experience as a parent makes me mighty irritated at public health and bioethics discourses about vaccine controversies, and alienates me from those discourses despite my “tribe membership.” Those discourses tend to presume parents the problem. They assume either parents are too ignorant, or that they have inadequate commitment to universal loves (humankind at large). Amidst focus groups searching for the best vaccine PR strategy, rarely do health professionals ask what medicine and public health are doing to promote parental distrust.

    One has to ask that question before serious answers may be considered.

    But here are my suggested answers.

    First, the approach to parents for vaccines is fundamentally deceptive. The vaccine is not just for Mary, to borrow on Prof. Nelson’s language in her nudge-by-changing defaults argument (“Mary really needs these vaccines.”) As she discusses, but contra her proposed model language, attaining herd immunity for the public is a major goal of asking Mary to be vaccinated. “Your community really needs for Mary to be vaccinated.” In fact, for some vaccines in some areas, anti-vaccine-parent intuitions that individual risk may outweigh individual benefit might actually be correct– if anyone ever bothered to seriously investigate that with careful modeling. My main point is that one of the biggest reasons for vaccinating Mary, the public health reason that may morally justify asking Mary to take small risks, is NEVER the one presented to parents at the doctors’ office. Although parents never hear “Your community really needs Mary to be vaccinated,” even parents without formal health training intuit that they are not being told the whole truth when goaded “Mary really needs these vaccines!”– and so feel wary. And then ironically they are bashed for not being willing to take risks for the community when no one asked them to take risks for the community.

    Second, ironically given the first deception which focuses vaccine “sale” on individual benefit, parents’ fierce (and in my view not only defensible but civilization-supporting) particular commitments to their particular child become bemoaned, when in fact pediatric medical care depends on those commitments. I agree with Maya Goldenberg on this point.

    Even more frighteningly, parents actual practical wisdom, including wisdom about their child, becomes denigrated in a framework that relegates all parents with questions about vaccines to the ignorant-or-selfish category– a knee-jerk reaction that protects the medical profession from asking what it may be doing to promote distrust. One way this manifests is in common refusals to take reports of vaccine reactions seriously.

    I have been disbelieved when I told physicians I know a family that lost a child to MMR vaccine reaction–even though that fatality was officially declared due to vaccine reaction, through the federal program for vaccine-reaction reporting and investigation. As a result of knowing one of those for whom taking a small risk became a catastrophic loss, I did my homework and knew MMR was one of the most prevalently reacted-to common vaccinations (though few reactions are dangerously severe). So what accommodation did this crazy parent request? Just to separate the M, M, and R vaccines into three separate vaccinations, a straightforward known way to reduce risk of adverse reaction. First I was told that certainly I would not want to come for three visits instead of one. When I said I happily would, I was reluctantly accommodated for something staff emphasized was administratively inconvenient for the clinic.

    I have also been disbelieved, in another clinic, when I reported what seemed to be a clear significant vaccine reaction of my daughter to her varicella vaccine. I thought I was doing a public service, thinking that this should be reported for tracking purposes, especially as the vaccine had just become a required school vaccine in our state. But the physician, whom I otherwise generally respect, would not do so–questioning the data I presented and insisting the close timing between the shot and body hives with alarmingly high fever must have been a coincidence.

    This prompted me to do a casual poll of parents on whether they think they ever noticed a vaccine reaction in their kids; whether they had ever reported one; and whether the report was taken seriously. While this was a convenience sample lacking significant N, the results beg for more systematic investigation. Most thought that at least once they had observed a reaction beyond the mild ones that are advertised possibilities. About half had voiced a concern that their child had a reaction to their doctors. In exactly ZERO cases did the physician acknowledge the possibility that vaccine reaction might explain the symptoms, let alone make a note in the patient chart or file any public health surveillance report.

    So this public-health- and- bioethics-trained parent admits: I suspect that official data on vaccine reaction rates may be distortedly rosy. Parents who express concern that Johnny was more than just mildly feverish and grumpy after his last shot might not get unduly alarmed or discouraged from vaccination if their observations were acknowledged. But when they are told either it was certainly a coincidence, or that they were just imagining it because they have been listening to the loonies, they understandably may become distrustful of the vaccination enterprise. Their experience of dismissal partially may explain lingering suspicions about a causal link between vaccines and autism despite the clear evidence to the contrary.

    The proposed counseling sessions for vaccine dissenters could be very helpful– if they are also listening sessions.

    Upping pressure on parents without challenging the underlying deceptiveness of vaccine messaging, and without taking seriously parents legitimate concerns about balancing risk and benefit for their particular child, will not solve the problem. Telling the truth and listening to parents might. As a first step, the health profession might ask itself, seriously, “why don’t they trust us?”

  7. Jamie Nelson says:

    Professor Mongoven has given me a good deal to think about, and I plan to do just that. I wonder whether the nudge strategy envisaged here is out and out deceptive–it does seem that despite the focus on public health concerns in much of the professional discussion of vaccine dissent, there are respects in which Mary as well as her community “really needs” her shots. (She needs them to travel freely; she needs them if the consensus in her community in favor of vaccination starts to unravel.) All this might be explained, of course. But then the distinctive motivational power of the nudge might dissipate, as we shift back the balance from engaging physician authority to trusting in information.

    Yet I find I can’t be insouciant about Professor Mongoven’ final question. There are lots of reasons for distrust, of course, including Big Pharma’s influence of research and therapy. But another might be that we’re having a conversation of this sort at all.

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