Vanita Fernandes suggests that the promotion of trust in scientific institutions and governing bodies should be an expanded aim of health literacy.

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In 2022, a controversial legal case in New Zealand known as Baby W attracted global attention. It involved a newborn baby who was born with a heart defect that required immediate life-saving open heart surgery. The parents only wanted blood from unvaccinated donors to be used for transfusions during the surgery. The Starship Children’s Hospital and New Zealand Blood Services could not guarantee that the blood used would come from individuals who had not been vaccinated against COVID-19. So, the parents did not give consent for the surgery. Given the severity of the baby’s condition and the irresolvable disagreement between the parents and doctors about the blood transfusion requests, a judge gave New Zealand Health Services guardianship of the baby. The surgery was performed in early December 2022 and the baby remained in the state’s custody until he recovered from surgery.

The tension between parental rights to make decisions for their child and a doctor’s duty to do no harm is a complex issue that arises when parents make decisions that impact their child’s health in a non-ideal way. In most cases, parents are considered the primary decision-makers for their children, but this right is not absolute.

Photo Credit: wikimedia.org. Image Description: Interior of Starship Children’s Hospital in Auckland, New Zealand.

This case highlights the need for a balanced approach that considers the best interests of the child. This issue is important to consider because after Baby W’s case, another set of parents requested unvaccinated blood for their toddler. How can we ensure that a child’s health and well-being are promoted while avoiding the need for state interference?

The particularity of Baby W’s situation is that the parent’s refusal is likely based on mistrust of scientific institutions and governments. Skepticism about the health impacts of vaccination is often due to a lack of  trust in governing bodies and scientific institutions. Individuals who request “unvaccinated blood” are worried about “developing long-term effects from the vaccine itself via the blood transfusion.” Even when governments and scientific institutions share empirical evidence supporting vaccination, these individuals would not accept such evidence because they are not convinced that these authorities have their best interest in mind. This refusal may cause government intervention, especially when a child’s health is involved, which in turn, increases mistrust. Members of the public will not comply with health policies or recommendations if they come from what they perceive as untrustworthy sources.

Health literacy refers to a person’s ability to process, obtain and understand health information and services that are needed to make appropriate health decisions. Literacy also includes a person’s capacity to identify trustworthy sources.  Health literacy requires that individuals have access to information about health procedures and that they are able to use that information to make informed decisions. To this end, when trying to promote health literacy, governments typically focus on the accessibility of information. Accessibility involves strategies such as providing patients with simple written directions, expanding access to reliable information about procedures, and investing in public health initiatives. While these may certainly increase access, it is not clear that strategies like these are actually useful in improving one’s skill to discern trustworthy information.

During the COVID-19 pandemic, there were many missteps by political and public health leaders such that trust in science and governments was eroded. This made it difficult for governments to promote trust as part of health literacy when sharing information. It will take time to rebuild this trust because it needs to be re-earned. It is not enough to claim that scientists, medical practitioners, and politicians have to communicate better. Clearer communication by itself will not work if trust is already lost. As such, rather than placing all resources towards increasing access to health information, governments and health institutions should also focus on building health literacy by gaining and maintaining the public’s trust in science.

For this to be effective, it needs to be thought of as a long-term project. The different public opinions about applied science topics commonly align with fundamental educational and ideological differences. Thus, it would be more beneficial to begin promoting trust in science with individuals at a young age. In fact, research shows that childhood is the best time to promote health literacy, so it only makes sense to add a focus on trust in scientific institutions as part of health literacy development. Promoting trust could be done by first acknowledging that, in the past, there have been times when science was done irresponsibly and unethically. From there, teaching children how science works, how to identify reliable sources and current regulations could be a way to promote it. For instance, during the COVID-19 pandemic, many individuals were confused about why the rules changed so often. But this is, in fact, how science works. Scientific progress is not linear, it is messy. Hypotheses are made, tested, and based on these conclusions, new hypotheses are developed. The fact that public health guidelines are changing indicates that science is working, and regulations strive to ensure its ethical practice. As a long-term project, preventing government intervention through the expanded aim of promoting trust might not be effective for skeptics like Baby W’s parents. However, their child might become more receptive to good health information.

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Vanita Fernandes is a PhD Student in Applied Philosophy at the University of Waterloo.