Childhood Vaccine Refusal and What to Do about It: A Systematic Review of the Ethical Literature

"A thorough understanding of the ethical dimensions of childhood vaccine rejection and responses to it is important when navigating vaccine rejection in the clinical setting, and when formulating policy..."

The dual role of vaccination, providing benefit to both the individual and community, complicates ethical questions regarding vaccine refusal - specifically, whether vaccine rejection is ethically justifiable. Parents' reasons for rejection vary widely and can be grounded, for example, in deeply held religious beliefs or general philosophical approaches to health, views on freedom of choice, or mistrust in government and/or the vested interests of vaccine producers. This systematic review sought to explore and characterise the normative arguments made about parental refusal of routine vaccination for children aged 5 and under, with the aim of providing researchers, practitioners, and policymakers with a synthesis of current normative literature.

Nine databases covering health and ethics research were searched for the period January 1998 to March 2022, and 121 publications were identified for inclusion in the review. Most of the articles were published in biomedical journals (34%), bioethics journals (21%), and journals that carry both classifications (20%). Normative content - anything that goes beyond mere description to consider right and wrong, good and bad, justifiable and unjustifiable, or legitimate and illegitimate actions or ways of being in the world - was analysed using a framework analytical approach.

Articles addressed two central questions:

1. Whether vaccine refusal was justified - These "refusal" arguments relied on principlism, religious frameworks, the rights and obligations of parents, the rights of children, the medico-legal best interests of the child standard, and the potential to cause harm to others. Some arguments within the literature were absolute in their position on whether vaccine rejection is justifiable; others weighed competing values in a situation-specific approach. Irrespective of the arguments used to justify a position, most of the literature frames the question of whether vaccine rejection is justifiable based on 3 key areas of concern: (i) respect for autonomy, the doctrine of informed consent, and the value of liberty, (ii) consequences for the child and others, and/or (iii) the normative significance of parental trust, distrust, and uncertainty. The paper explores the main arguments within these concepts. As the discussion shows, these concepts are not discrete – they are often weighed against one another, linked by causal claims, or held in tension in the arguments made.
2. Whether various policy or practice responses to those who reject vaccines are justified - These "response" arguments were broadly divided into 4 main types: (i) government mandate policies (such as legal ramifications for refusing vaccination and vaccination as a school entry requirement), and other coercive policies, (ii) exemptions to mandate policies, (iii) individual practitioner and medical practice responses (including patient dismissal from practice for vaccine refusal, vaccinating against parents' will, and nudging), and (iv) withholding health resources. Policy arguments considered the normative significance of coercion, non-medical or conscientious objections, and possible reciprocal social efforts to offset vaccine refusal. Some critiques of policy or practice responses to non-vaccination emphasise that these responses can have inequitable effects and argue that this is unjustifiable. Exemption policies are a key focus here. Individual physician practice arguments covered nudging and coercive practices, patient dismissal, and the ethical and professional obligations of physicians. The literature includes authors who argue that these responses are justifiable and others who argue they are not. Much like the refusal arguments, some response arguments are absolute in their position, while others advocate weighing competing values in a context-specific way.

There were more "response" arguments than "refusal" arguments in the literature. On balance, most of the literature on "refusal" arguments contended that it is not justifiable for parents to refuse vaccination for their children. Most of the "response" argument literature argued against the various responses to non-vaccination put forward. However, compared to "refusal" arguments, "response" arguments were more varied and nuanced, and they often came with caveats (e.g., exemptions to mandates are permissible if the disease burden is low).

The included articles predominantly originated from medical journals: These accounted for most of the papers focused on "response" arguments. This fact may reflect the needs of readers of medical literature for guidance on how they should respond to non-vaccinating parents, highlighting the importance of making literature addressing the ethical dimensions of vaccine refusal accessible to immunisation practitioners. Notably, medical disciplines are primarily guided by practical considerations and a tradition of arguing from evidence rather than from ethical or philosophical principles. This privileging of evidence over principles may make it difficult to explore differing vaccination positions within the medical arena, potentially contributing to the adversarial clinical immunisation encounters described by vaccine-refusing parents and clinicians alike.

Thus, the dominance of the medical literature relating to "response" arguments suggests that knowledge in this field may be advanced by incorporating more voices with expertise in ethics, law, and policy. As shown in this paper, most ethical arguments pay attention to evidence. Ethical arguments can add nuance to biomedical thinking about consequences (e.g., consequences for individuals vs. the collective) and also about competing values (e.g., balancing consequences against concerns regarding autonomy, consent, and liberty). The challenge for ethicists is to provide these arguments in an accessible and compelling form.

The researchers argue that those writing about vaccination should be aware of the potential for stigmatisation and "othering" that can result by framing non-vaccination as a failure of parents. When such arguments are used to inform policy and practice responses to non-vaccination, it introduces the potential for further alienation of non-vaccinating parents.

In conclusion, this review "can serve as a platform for future research to extend the current normative literature, better understand the role of cultural context in normative judgements about vaccination, and more comprehensively translate the nuance of ethical arguments into practice and policy."