The Trump administration has made sweeping changes to vaccine policy over the past year justified by invocations of patients’ “personal autonomy.” In January, Department of Health and Human Services head Robert F. Kennedy Jr. Trump’s slashed the number of routinely recommended childhood vaccines from 17 to 11 after an HHS report emphasized “personal autonomy and self-determination” as key principles necessitating reconsideration of the childhood vaccine schedule.
That same month, Trump’s new head of the federal government’s vaccine panel opined that all childhood vaccines might be optional in schools on similar reasoning: “What we are doing is returning individual autonomy to the first order,” Kirk Milhoan said, noting that we allow people to make various choices, like unhealthy alcohol consumption, even if there are risks.
And, late last year, Florida’s top health official and Trump ally Joseph Ladapo similarly cast school vaccine mandates as an encroachment on “bodily autonomy” as he moved to eliminate some vaccinations required for school entry, although the effort has sputtered.
Pushback against such policies from those who support school vaccine requirements — as I do — typically emphasizes that failure to vaccinate a child can jeopardize not only his or her own health, but that of other children in the classroom, including some who may not be able to be vaccinated. It’s not only a matter of personal autonomy, the argument might go: Our choices have impacts on others.
But in truth it is not a matter of autonomy at all, because young children do not decline vaccination — their parents do. And while parents appropriately have broad rights and responsibilities for their children’s health, that is not “autonomy.”
This important distinction has been elided in this debate, which is unfortunate: Recognition that a parent’s responsibilities are not equivalent to a patient’s autonomy widens the scope of policies appropriate to ensure that young patients get physician-recommended care.
Medical ethics are traditionally presented as a framework of interlocking principles that can sometimes conflict. For instance, “beneficence,” or the principle of doing what is best for a patient, might in some instances clash with “autonomy,” or the principle of respecting patients’ sovereignty over their own bodies, which is the foundation of informed consent. Among adult patients who have the capacity to make their own medical decisions, autonomy (with rare exceptions like suicide) generally wins out — even in scenarios, as in my field of adult intensive care unit (ICU) medicine, where the consequences can be dire. For instance, in the New York Times, the physician and writer Daniela Lamas recently wrote about a nightmarish case of a young man she treated in the ICU with a dangerous heart rhythm abnormality that could have been fixed with a relatively minor procedure (placement of a pacemaker). But he steadfastly refused despite emphatic pleading from doctor after doctor, and consequently died. This was a preventable loss of life, but the only alternative would have been physically forcing an invasive procedure upon an adult deemed to have capacity.
Things are different, of course, for patients — whether adult or child — who cannot make decisions for themselves. In these instances, medical decisions must typically fall to some sort of surrogate (typically a family member) acting on the advice of a physician. Adults, for instance, can assign “health care proxies” who are legally empowered to make medical decisions on their behalf — ranging from approving treatments to stopping life support — in the event of their incapacitation. Reliance on such proxies is commonplace in my field: These people are often instructed to act in accordance with what they believe the patient would want, not what they themselves would want.
For children, in contrast, the default decision-maker is the parent.
Even among adults, equating proxy decision making with true “personal autonomy” is something of a pragmatic fiction. For one thing, studies show that discordance between proxies’ decisions and patients’ “wishes” are common, that our wishes fluctuate over time, and that we might not even necessarily want them to guide decision-making near end of life.
More fundamentally, it is difficult if not impossible for any of us to know precisely what we would “want” in some future poorly defined state: The matrix of all conceivable medical conditions we might one day face — and the potential interventions that might be considered for each — is vast. So proxies do the best they can, working with physicians, to make decisions that make sense and advance their loved one’s interests, and (insofar as they may be understood) wishes. Still, due to such limitations, the rights of proxies do not have the same ethical preeminence as real autonomy exercised by an individual herself or himself. For instance, imagine that the young man with a heart rhythm problem was temporarily unconsciousness, and so his medical team had to instead consult his proxy regarding placement of the pacemaker. Would doctors have withheld a relatively minor procedure that would prevent imminent death of a young adult with (potentially) a full life ahead because the proxy refused to give permission? I am doubtful. Similarly, a parent’s directive that doctors withhold antibiotics from a child who arrived at the ER with a rapidly lethal infection like bacterial meningitis would be rightly unheeded.
But there are further distinctions between surrogate decision-makers for adults (i.e., proxies) and children (i.e., parents). In the case of adult patients, proxies can at least try to act on what they understood of a patient’s philosophies about life, such as previous reflections on interventions like life support, and sometimes even their written directives (although “living wills” tend to be very open to interpretation). But this is obviously not possible with infants: When a parent declines a universally recommended vaccination for their child, there is not even a pretense that this is the choice the child “would make” if they could speak for themselves. Hence, when it comes to young children, the ethical conflict is not between the principles of “beneficence” and “autonomy,” but rather between “beneficence” and “parental rights.”
I am not arguing against the central responsibility of parents in medical decisions for their children: After all, who else would have it? But it is critical to clarify that, for children, distinct principles are in tension.
For instance, when I previously saw (adult) patients in clinic, I would review indicated vaccines and make recommendations. But if a patient declined a recommended vaccine, that was that and we would move on to the other things, even if she (say) had advanced emphysema, making her decision against the flu vaccine seem imprudent to me. There would be no world in which I would or could “fire” a patient for such a decision: That’s autonomy.
The principles are different in a pediatric clinic: A physician who is not allowed to vaccinate a child against measles is being told to deliver substandard care to a patient who cannot speak for themselves. Autonomy has not entered the chat.
It does not follow from this that pediatricians should not accept patients whose parents decline vaccination: As a nudge we may be sympathetic, but ultimately every child needs a pediatrician so I oppose it. But again, the role of autonomy in the first scenario, and its absence in the second, helps explain why these two situations have an entirely different valence.
School vaccine mandates can be seen in a similar light. They are important for the health of all children given the communicable nature of many vaccine-preventable illnesses, and that is a sufficient basis for many of them. But even putting such public health prerogatives aside, such mandates can serve as powerful protections that advance the interests of children who themselves would otherwise have gone unvaccinated. Such protections do not infringe on autonomy: If anything, lifting them could undermine it.
This may seem paradoxical, but it is not. It is of course ludicrous to think that we can know anything about an individual infant’s opinion on, say, the measles vaccine (the only data point to go on would seem to be their ubiquitous hate of needles). But the vast majority of adult Americans support vaccination against preventable illnesses like measles. At least today, the average infant, upon reaching an age when they can consider the evidence, will have supported their own vaccination. More importantly, when autonomy is absent and individual “wishes” unknowable, the guiding principle should be best interest.
The principle of autonomy is rightly sacrosanct in medicine, although even it has limits, which gives rise to multitude ethical quandaries in my field of intensive care unit medicine, and other disciplines. But such controversies are incidental to the debate over school vaccine mandates. When it comes to childhood vaccine recommendations or requirements, “personal autonomy” is little more than a red herring. Proponents of such protections should reframe the debate accordingly or risk ceding some ethical high ground.
Adam Gaffney, M.D., M.P.H., is a pulmonary and critical care physician at the Cambridge Health Alliance and an assistant professor of medicine at Harvard Medical School.
