Laws About Transparent School Vaccination Reporting: Public Health Context and Ethics

Abstract

In response to a recent surge in vaccine exemptions for school-aged children, advocacy for transparency regarding school vaccination rates has gained momentum in the sphere of public policy and legislation. We explore the public health context for transparency-focused school vaccination reporting laws and recent legislative successes and failures. We then provide an ethical analysis of policy that mandates publicly accessible, granular reporting of school vaccination rates.

The ethical justification for this type of policy is robust. Although there is no evidence demonstrating its effects on public health, transparent school vaccination reporting has the potential to enhance individual and public decision-making, especially concerning the protection of children with compromised immune systems. This policy also offers the benefit of preserving the autonomy of parents who choose not to vaccinate their children.

Policymakers in all states should support passage of this type of legislation along with other effective vaccination policies, including evidence-based vaccine education for parents who seek exemptions and reimbursement for clinicians who provide vaccine-related counseling.

Advocacy for transparency regarding school vaccination rates has recently gained momentum in the sphere of public policy and legislation as a response to increasing vaccine exemptions.¹ “Transparent” reporting of school vaccination rates entails making granular school vaccination data available to the public. Over the past decade several states have passed laws requiring transparency. Other states have debated whether to follow suit. We explore the context for transparency-focused laws and offer an ethical analysis of this policy innovation, emphasizing its role in the larger framework of provaccination policy.

BACKGROUND

An array of factors influences parental decision-making about vaccines, including the increasing complexity of the vaccination schedule, decreased funding for evidence-based vaccine education, and the spread of misinformation over the Internet. Although all public schools and childcare facilities mandate full compliance with the vaccination schedule set by the Centers for Disease Control and Prevention for enrollment, vaccine exemptions permit children to attend without meeting this requirement. Most parents who choose not to vaccinate their children seek nonmedical vaccine exemptions—a term that refers to exemptions for individually held religious, moral, or philosophical beliefs. Currently, all but four states grant either religious- or belief-based exemptions; this number will grow to five in 2021, when a Maine law removing these exemptions will take effect.²

As vaccine exemptions grow in number, herd immunity decreases. Herd immunity is a protective effect achieved when the majority of a population gains immunity against a disease. Because individuals with immunity cannot spread the disease, herd immunity confers protection on those who are too young or immunocompromised to be vaccinated.³ To maintain herd immunity, community vaccination rates must remain above 90% for most diseases and as high as 96% to 99% for rapidly transmissible diseases such as measles and pertussis.⁴ Currently, 25 states sit below this threshold for both measles and pertussis.⁵

Before California’s elimination of nonmedical exemptions in 2016, one third of its children lived in counties with vaccination rates below 90%.⁶ These geographic gaps in herd immunity created communities that were susceptible to the rapid transmission of disease. That is what happened in 2014 when an individual spread measles to 39 people at the Disneyland theme park. The outbreak affected 125 individuals, 96 of whom were unvaccinated or lacked documented vaccination status.⁶ Similarly, in 2017 an outbreak of measles originated in a Somali American community in Minnesota, where the immunization rate against measles had dropped below 95%. Of the 65 affected individuals, 63 were unvaccinated.⁷ At the end of 2018, several outbreaks of measles escalated in Washington and New York. More than 70 cases have been confirmed in Washington, with more than 90% of the individuals involved lacking vaccinations against measles.⁸ In New York, more than 500 cases have been reported, the majority of which occurred in Orthodox Jewish communities with low vaccination rates.⁹

TRANSPARENCY AS A FOCUS OF LEGISLATION

The foreseeable risks of losing herd immunity raise the question of how to protect public health while minimizing infringements on liberty. One option is to increase transparency. Colorado, Illinois, Oregon, and Vermont have passed laws that mandate school-level reporting of aggregated vaccination rates to state health and education departments.^10–13 These laws also require that school-level vaccination data—including the numbers for each type of exemption—be made available to the public. In 2017 through 2018, similar legislation was introduced in several states. Connecticut and Texas considered bills requiring these states’ health departments to collect and publish vaccination rates for all schools; these bills were reported favorably out of committee but went no further. In other states, bills have been introduced but stayed in committee. Bills in Arizona and Virginia would have required public schools to maintain Web sites with vaccination data. Missouri and Nevada considered more limited legislation to allow parents to request vaccine exemption rates from their child’s school.

ETHICAL ANALYSIS

In considering the ethical implications of transparent school vaccine reporting, the six-step ethics framework for public health developed by Kass offers a valuable structure for analysis.¹⁴ The six steps are as follows:

• 1.What are the public health goals of the proposed program?
• 2.How effective is the program in achieving its stated goals?
• 3.What are the known or potential burdens of the program?
• 4.Can the burdens be minimized?
• 5.Is the program implemented fairly?
• 6.How can the benefits and burdens be fairly balanced?

Public Health Goals

Transparency-focused school vaccination policy serves two fundamental goals. First, it provides parents with specific information on vaccination rates at schools where their children are or may be enrolled. Especially in the case of immunocompromised children, this information is essential for parents to make informed decisions about where their children can safely attend school. These children’s medical status precludes them from receiving vaccinations, thereby placing them at significant risk of health complications and even death if a disease outbreak were to occur at their school. Additionally, sharing this information with parents has the potential to foster more informed discussions about vaccination rates and risks to herd immunity in communities.

Second, transparency equips nongovernmental organizations and health care providers with data to target their efforts at increasing vaccination rates. With school-level data, organizations such as vaccination coalitions can augment the efforts of state health departments and public health agencies—whose programming can be limited by resource constraints—in conducting research and introducing initiatives to promote vaccination uptake and education within geographic regions of need. For clinicians, transparency enables them to proactively determine risks to immunocompromised patients and provide more informed advice to parents. Further, health care providers have been identified as highly influential in vaccine decision-making, yet the investment of time required to counsel vaccine-hesitant parents is a barrier to implementation of best practices.¹⁵ In the absence of policies to improve clinician reimbursement for vaccine education, school-level data may motivate efforts to provide more effective, fact-based messaging about the dangers of foregoing vaccination to parents whose children attend schools where herd immunity is imperiled.

Achieving Stated Goals

Transparency-focused laws have received much less attention than have laws that eliminate nonmedical exemptions, and to our knowledge no systematic assessments of effectiveness have been conducted. Policymakers engaged in drafting future legislation should consider the inclusion of an evaluation component. The limited information we have been able to gather suggests that this policy serves the goals we have described. In terms of facilitating informed school decisions, the Oregon Health Authority has received reports from physicians that school-level vaccination data have assisted them in discussing herd immunity and safe school choices with families (electronic personal communication, Oregon Health Authority, Public Health Division, Immunization Program, January 19, 2018).

In Texas, a nonprofit group called the Immunization Partnership has been engaging families of immunocompromised children in conversations about informed school decisions and has helped them request this information (electronic personal communication, the Immunization Partnership, May 17, 2019). However, without invested parties such as health care providers and vaccination coalitions to distribute this information to families, transparency-focused laws may benefit only parents with a baseline level of literacy on herd immunity and the motivation to seek out information on school vaccination rates. Further, even with such knowledge, parents may not be able to act on it because of financial and geographical limitations. Only families of certain financial means can elect to send their children to private schools. Families that live in rural areas—which tend to be hotspots for nonmedical exemptions¹—may only have one school option within a reasonable commute from their home.

To enhance the utility of school-level data in promoting conversations about vaccinations throughout communities, policymakers could consider requiring that health departments prepare a report for every school displaying that school’s vaccination rate for measles and other conditions of concern and whether the school sits at low, medium, or high risk of a disease outbreak based on this rate. Schools could then share this information on their Web sites. Parents who would have otherwise been unaware of this information would perhaps then be more likely to engage in conversations about vaccinations.

Given increasing concerns about outbreaks, knowledge that their community is vulnerable could serve to cultivate accountability among some parents of unvaccinated children. However, it is important to consider unintended consequences, as there is a risk that this information could encourage parents who oppose vaccinations to seek like-minded communities, further diminishing herd immunity in already vulnerable regions. This possibility strengthens the case for evaluating the impact of this policy. Finally, the embrace of this policy by the Immunization Partnership in addition to their efforts to provide community vaccine education suggests that it is reasonable to believe that transparency will serve the second goal of furnishing nongovernmental organizations with the data they need to operate more effectively.

Known or Potential Burdens

One of the potential burdens of transparency-focused school vaccination reporting laws is infringement on privacy. Children with nonmedical exemptions could be identified in smaller schools, placing them at risk for discrimination and bullying. In the event of an outbreak, this information could also have the unintended consequence of stigmatizing communities, as seen in the case of Orthodox Jewish communities during the New York measles outbreak.¹⁶

Additionally, this policy could impose administrative and financial burdens on schools. Although schools are required to maintain vaccination records for all enrollees, further effort is required to submit that information to state authorities. In states that have mandated transparency laws, burdens have fallen on health departments as well. Colorado’s health department received no additional funding to create a centralized school vaccination reporting application and provide support to schools (electronic personal communication, Colorado Immunization Information System, Immunization Branch, January 24, 2018). In Vermont, the state health department took on the financial burden of hiring a contractor to collect school vaccination data (electronic personal communication, Vermont Department of Health, January 19, 2018).

Burdens Minimization

Several approaches could minimize privacy risks associated with this policy. The most important is de-identification. The states that have legislated transparency have followed federal guidelines for removing personal identifiers such as name and date of birth. Cell suppression (i.e., omission of cells on a data sheet when they fall below a set threshold) is a strategy that further reduces risks. In Vermont, authorities do not provide reports for schools with fewer than six students enrolled (electronic personal communication, Vermont Department of Health, January 19, 2018). Colorado and Oregon do not report for sites with 10 or fewer students (electronic personal communication, Oregon Health Authority, Public Health Division, Immunization Program, January 19, 2018; electronic personal communication, Colorado Immunization Information System, Immunization Branch, January 24, 2018). And in Oregon, for any exemption rate above 90% the statistic is reported as 90% or more so that an entire group of children cannot be identified as exempt (electronic personal communication, Oregon Health Authority, Public Health Division, Immunization Program, January 19, 2018).

Such privacy measures reduce the risk that transparency-focused laws could trigger harassment of families who have not themselves shared information about their vaccination status. Health departments should also consider undertaking initiatives to educate school administrators on how to engage parents in sensitive and considerate conversations about vaccinations, stressing the value of this strategy over pressuring or harassing families who do not vaccinate. The risk of transparency leading to the stigmatization of communities, which raises social justice concerns in the case of marginalized or otherwise vulnerable ethnic and religious communities in particular, should be addressed by adopting an approach that takes areas of concern seriously and enlists members of the community in crafting and carrying out educational messaging. Not only does this approach demonstrate respect; if done well it also ensures that members of these communities share in the health benefits of vaccination.

To address potential fiscal and administrative burdens, policymakers can stage implementation to allow time for adjustment. They can also support the development of simple, intuitive electronic applications and train school administrators on how to use these applications to collect and report vaccination data.

Fair Implementation

Several considerations can extend the benefits from this policy to more families of immunocompromised children. The policy could provide that if vaccination rates at a child’s current school do not meet the threshold for herd immunity, then the parents of that child have the right to meet with their school district to arrange transfer to another school. Although not a perfect solution or feasible in all states, in areas where no adequate school choices exist, states could offer tutoring to children who are immunocompromised. Based on federal requirements, states should already have an infrastructure in place to provide these services to students with disabilites.¹⁷ Another option would be to place the burden of changing schools on the parents who choose not to vaccinate their children. Favoring this approach is the argument that it places the burden on the parties whose voluntary choice creates third-party risk. On the other hand, this approach may be difficult to implement and could increase social antagonism.

In the case of schools where education initiatives might suffer if resources are pulled toward compiling vaccination reports, states could consider providing financial incentives for these schools. In states where policymakers would not support increasing education budgets, schools with demonstrated resource limitations could apply for a reporting exemption. For the purposes of extending resources to these schools, this label would still provide interested organizations with an indication that these schools may have high rates of incomplete vaccination records.

Fairly Balanced Benefits and Burdens

Inherent to vaccination policy is the challenge of balancing the public good with individual autonomy.^18,19 From a public health perspective, these values would ideally align, with parents deciding to vaccinate their children to promote their child’s health and contribute to the collective good that is herd immunity. However, for some individuals, these values stand in conflict. Policies that seek to minimize harms to third parties and improve vaccination rates comprise a spectrum. At one end are policies that limit autonomy by banning nonmedical vaccine exemptions (now adopted by five states and consistent with settled US law upholding mandatory vaccination) or holding nonvaccinating parents liable for the harms of disease outbreaks (proposed by commentators).²⁰ Although they protect herd immunity, such policies run the risk of increasing discord and weakening public trust in the merits of vaccination.^15,19 At the other end of the spectrum are policies focused on education about vaccinations, which do not constrain individual autonomy but require significant resources to have an impact on public health.

Transparency sits in the middle of this spectrum, providing information that could potentially protect those most vulnerable to gaps in herd immunity and achieve modest increases in vaccination rates. Although transparency does not restrict the autonomy of parents to choose whether to vaccinate their children, it could infringe on liberties by creating small but mitigatable risks to privacy. To more fairly balance these interests, the measures we have detailed should be considered.

CONCLUSIONS AND RECOMMENDATIONS

Transparency-focused school vaccination reporting offers a means to inform individual and public decision-making in response to increasing disease outbreaks. Although the risk of outbreaks might grow to the point that laws eliminating nonmedical exemptions are widely accepted as necessary, currently—despite endorsement by all major professional medical societies—most states have resisted passing these laws. Transparent school vaccination reporting should be a feasible policy in these states, as it maintains parental autonomy to seek vaccine exemptions. Although there is no evidence that transparency-focused policy on its own would produce substantial public health benefits, this policy could function well within a portfolio of strategies, aiding efforts to narrow nonmedical exemptions by making relevant information publicly available. Other vaccination policies lawmakers should consider include evidence-based vaccine education for parents who seek nonmedical exemptions and reimbursement for clinicians who provide vaccine-related counseling.