Listening to Vaccine Refusers

"A lack of trust in health professionals is central in understanding vaccine refusal."

In the field of bioethics, vaccine refusal is often conceived of as a problem in which individual citizens "free ride" on the herd immunity of others. Yet in this article, Kaisa Kärki argues that treating vaccine refusal as an instances of free riding does not necessarily lead to effective interventions, because vaccine refusal may instead represent an attempt to exit a public good. If seen as a kind of exit mechanism, vaccine refusal is better met, Kärki suggests, by listening to the actual grievances of patients in healthcare and engaging in dialogue to rebuild trust.

In the first part of the paper, Kärki cites empirical research on the reasoning behind vaccine refusal to support her view that free riding on herd immunity does not arise as a significant explanation of the motivations for this complex phenomenon. In general, interactions with healthcare providers have been found to be the key in understanding how vaccine hesitancy emerges. For example, Navin (2013) is only one researcher who has found that vaccine refusers have often been treated disrespectfully by physicians. Perceived injustices in healthcare practice may explain why women, the economically poor, and the marginalised may distrust the medical establishment. Vaccine refusal may also stem from distrust of the political establishment of an entire country, as happened, for instance, in the case in the Nigerian boycott of polio vaccination.

Next, the author explores Hirschman's theory of exit and voice (1970). Exit is a situation in which the articulation of grievances is perceived to be somehow not worthy of effort. Citizens who have lost trust in the public expression of dissent are more likely to prefer silent mechanisms of "voting with their feet". For instance, Nurmi and Salmenniemi (2018) recount that vaccine-refusing parents stopped talking about their choices to healthcare personnel after negative experiences and the resultant lack of trust.

Herd immunity is usually seen as a public good in bioethics; even if one citizen were to oppose herd immunity to polio, only living in a society that provides this benefit would make the citizen enjoy the public good of herd immunity to polio. Even if one member of the collective cannot exit herd immunity alone by refusing to vaccinate, vaccine refusal may represent treating a public good as if it were a private good. Such a confusion may be connected to the postmodern perception of the patient as a consumer; Kata (2012) has argued that the anti-vaccine movement takes advantage of this postmodern medical paradigm by framing the refusal to be vaccinated as part of the patient's choice.

In the third part of the article, Kärki shows how both the exit approach and the social science of vaccine refusal leads to similar findings about how to effectively solve this issue. She writes: "Exit is a sign that communication between citizens and the state is not functioning properly. According to Hirschman, institutions that do not wish to encourage the exit option should provide as many effective channels for articulation of criticism as possible....Not only does the number of channels matter, but it is also important that the organization is responsive to the criticisms made (Hirschman 1970)....In healthcare, reducing the cost of voice would mean increasing the number of reporting channels for offensive behavior by physicians and developing ways to increase democratic decision making between physicians and patients."

These findings emphasise respectful discussion with vaccine-hesitant patients instead of immediately ascribing blame to those who refuse to be vaccinated or display hesitancy about a vaccine. Specific suggestions from the literature cited here include:

• Avoid "testimonial injustices", such as not hearing out mothers talking about the health problems of their children.
• Avoid "epistemic vices", such as transferring information without explanation, in an authoritarian way.
• Take the concerns of vaccine sceptics seriously, as they may be valid.
• First inquire about the worries of the public, and then use them as a starting point for discussion.
• Avoid framing vaccination from the polarising perspective of pro- and anti-vaccination, instead recognising the diverse nature of vaccine decisions.
• Approach the issue of vaccine mandates with great care; the increased distrust in healthcare may outweigh potential benefits.
• Foster a shared decision-making model in healthcare, which can prevent people's receptivity to anti-vaccine arguments (ostracised people are likely to share their grievances only with those who already share the same attitudes).
• Understand how racial injustices contribute to vaccine refusal, because anti-vaccine groups are framing vaccination in terms of past medical abuses against minority groups.
• Base any interventions to address vaccine hesitancy on empirical data and situational assessment.

The closing sections bring the discussion back to the change of perspectives needed in bioethics due to the urgency of tackling vaccine hesitancy. In short: "If the legitimate grievances responsible for vaccine refusal are not heard or addressed by healthcare policy, further polarization of attitudes to vaccines is likely to ensue." Kärki explains: "Perceiving vaccine refusal as an exit mechanism of a kind raises ethical questions beyond individual responsibility to vaccinate, such as: What is the role of healthcare institutions in making sure they do not alienate marginalized groups?"

In conclusion: "If vaccine refusal is perceived as an instance of free riding, it is often met with sanctions. If it is perceived as stemming from lack of information, it follows that campaigns can reduce its prevalence. If it seen as an exit mechanism, addressing concerns and increasing the number and quality of feedback channels should reduce its prevalence. The social science of vaccine refusal implies consistently that respectful discussion among healthcare personnel and vaccine-hesitant individuals is key in reducing the prevalence of vaccine refusal."