Vaccine Hesitancy and Trust. Ethical Aspects of Risk Communication

"Different countries adopt different strategies in relation to the problem of vaccination and the challenge to achieve and maintain protection and herd immunity. However, mass vaccinations, even if they are not mandatory but merely strongly recommended, entail ethical problems that need to be thoroughly discussed in society and managed responsibly by the government and its representatives."

Parents refusing or hesitating to have their children vaccinated might be convinced if the risks and benefits of vaccination and disease are discussed in a respectful and ethically deliberated way. This is one of the central claims of a paper exploring vaccination policy from an ethical perspective. The paper focuses on the Swedish context, as it links the current scepticism to the H1N1 vaccination programme in 2009, but it is relevant to all countries reflecting on how to manage vaccination responsibly.

Jessica Nihlén Fahlquist lays out the crux of the matter as follows: "The central ethical dilemma of public health is how to promote the health of the population while respecting individual liberty and autonomy. In this paper, it is assumed that vaccination, as public health and health promotion generally, within certain limits, is ethically justified. However, this does not mean that vaccination should be promoted at all costs and in any way. Instead, there are good reasons to discuss ethical boundaries to risk communication concerning vaccination and to discuss the government's responsibility for individuals affected by side effects. Thus, at this point, the most urgent ethical question is not whether mass vaccination is right or wrong, or whether it is ethically acceptable to refuse vaccination. Instead, we should discuss how vaccination should be communicated in order to be ethically justified."

She explores the concept of vaccine hesitancy, noting that the public's concerns are "complex and nuanced and affected not merely by a distrust of science, but driven by a mix of scientific, psychological, socio-cultural and political reasons [Larson H, Cooper lZ, Eskola J, et al.; and Blume S]. Decision-makers need to understand this mix and where people's concerns are coming from in order to achieve communication based on trust, and to increase vaccine rates [Slovic P]." Those communicators seeking to cultivate trust risk stumbling when they introduce a false dichotomy: between rational, educated vaccine providers/defenders and emotional, irrational vaccine skeptics. "Instead of seeing emotions as a negative thing per se, we ought to see moral emotions, i.e. emotions concerning what is right and wrong, as a starting-point of a discussion about the moral acceptability of risks. Deliberated emotions are both cognitive and affective." This suggests that "the way vaccines are communicated is brought to the fore. It is not sufficient, from an ethical perspective, to inform the public of the scientific evidence and probabilities concerning risks and benefits. There are good reasons to make sure such information is also provided in an ethically acceptable way, taking moral emotions and values seriously [Nihlén Fahlquist J and Roeser S]."

Against this backdrop, Fahlquist argues, a normative analysis of risk communication in the context of vaccination is needed. She proposes three levels on which risk communication should be analysed and explores each in relation to the communication concerning vaccines initiated by experts and government representatives and directed towards the public. The levels are:

1. Responsible risk communication - the message: Fahlquist explains that public health activities attempt to influence people's perceptions and behaviours through persuasive interventions and social marketing, making them inherently value-laden. In the context of vaccination policy and risk message, vaccination can be framed in different ways - e.g., around concepts of personal responsibility and culpability. In order to come to decisions concerning the framing of risk messages, it is necessary, according to Fahlquist, to have a respectful discussion in society including all views.
2. Responsible risk communication - the procedure: If relevant stakeholders are involved in political discussions and decisions about risk, it increases the likelihood of achieving acceptance and maintaining trust, she says. Based on the view that moral emotions should be seen as the starting point of a discussion, it has been suggested that moderators of public debates and deliberations could do this practically by asking explicit questions about moral emotions, such as, "Can you understand the viewpoint of the person from the other group? If not, can you try to place yourself in their shoes by listening to their story?"
3. Responsible risk communication - the effects: "Trust in experts and policy is likely to partly be a consequence of how experts communicated the risks and benefits of previous policies." To this end, Fahlquist looks at the example of the way the H1N1 vaccination policy in 2009 and its effects were managed in Sweden. In short, the government encouraged people to get the Pandemrix vaccine, which they said was safe; studies later showed a correlation between the vaccine and narcolepsy. Fahlquist makes the point that, in such cases, there is a responsibility to follow up on the consequences, listen to individuals suffering from side effects, attend to their new needs, and possibly to offer compensation. This is important for normative ethical reasons, and also in order to restore and maintain trust in experts and vaccines. Furthermore, in general, "It is reasonable to expect the media to be self-critical as well and take responsibility for how risks and benefits, as well as science and values are communicated."

In conclusion: "the government and its representatives have a responsibility to communicate the risks and benefits of vaccinations in a responsible way, taking ethical aspects of the message, procedure and effects into consideration. The concerns of lay people should not be seen as signs of ignorance, but as a starting-point for a responsible and respectful discussion."