Firefighters take on great personal risks to provide essential services for their communities. There are approximately 1 million firefighters in the United States who respond to over 25 million calls each year [1,2]. Approximately two-thirds of these firefighters are volunteer or unpaid, and one-third are career (“paid”) firefighters [1]. Firefighters encounter a vast array of incidents, including fires, natural disasters, and medical emergencies requiring emergency medical services [2]. US firefighters sustain high rates of injury and fatality in the line of duty: in 2022, there were over 65,000 injuries and 96 fatalities that occurred at work [3,4]. Beyond on-duty incidents, firefighting has been linked to long-term adverse health outcomes, including elevated rates of certain cancers [5,6].

There are growing calls from fire service leaders, government officials, and researchers to utilize firefighter health and safety data to better understand the hazards of firefighting and design interventions to protect future generations [7-12]. Proposed data sources include national injury or disease registries, biometric or exposure data from wearable devices, and self-reported risk factors or health outcomes from other digital health platforms, such as smartphone apps [8,13,14]. While recent data collection efforts have focused on injury and disease surveillance [8,9], researchers have identified flaws in existing data infrastructure, such as large swaths of missing occupational data in cancer and burn registries, highlighting the need for more sophisticated data reporting and data linkages [9,10,12]. Federal agencies are supporting new data platforms to enhance injury surveillance and research. In 2023, the US Fire Administration began developing the National Emergency Response Information System (NERIS), a new fire service analytics platform, and the National Institute for Occupational Safety and Health created the National Firefighter Registry for Cancer [7,15,16].

While these new data initiatives may bolster health and safety efforts, expanding the collection of or access to firefighter health and safety data raises ethical concerns [8]. Additional firefighter data might help improve health and safety, but collecting these data, particularly within fire departments, raises concerns about privacy, as firefighters might be asked or required to share sensitive information with their employers, government agencies, or researchers. The fire service’s hierarchical organization—fire departments are frequently described as paramilitary organizations—adds additional complexity around data privacy, as firefighters of lower ranks may feel they have less power or choice as to whether or not they want to share personal health information with their employers.

There is little research on data privacy in the fire service, and existing studies focus on the acceptance of new technology in fire departments. Research from our study team examined perceptions of wearable data in the fire service, concluding that while leaders were optimistic about the potential for wearable data to ensure health and safety, firefighters had concerns about privacy, autonomy, and job loss [17]. Although firefighters identified major tradeoffs associated with wearable data, firefighters and leaders agreed on the need for data protections, such as deidentifying data, limiting wearable use to specific settings, providing firefighters access to their data, and preventing punitive data use. Another study examined the implementation of a biometric earpiece that firefighters could wear at a live fire, which would provide an incident commander with data including heart rate, body temperature, calories burned, and exertion estimates [18]. The study concluded that firefighters were concerned about the impact of technology on their autonomy and that firefighters were more skeptical than department leaders. Other researchers developed a biometric privacy framework based on firefighter attitudes toward a personnel management system that would use biometric information (eg, a fingerprint) to manage personnel at a fire. This study identified concerns related to workplace accountability, data access, and employer trust [19]. Collectively, these studies suggest that firefighters may have complex views on how their health and safety data are handled in the workplace, but we lack robust evidence on their privacy preferences and whether or not these preferences are understood and honored in fire departments.

Our study examined fire service members’ and their partners’ views regarding occupational health and safety data privacy. We explored data sharing, access, and communication preferences among career firefighters, fire department leaders, and national fire service leaders. Our findings highlight opportunities to improve current data privacy practices and ensure that new occupational health and safety digital health platforms, from wearables to mobile health to web-based surveys, are ethically implemented.

Our study examined firefighters’ and fire service leaders’ data privacy preferences and identified opportunities for fire departments and researchers to ensure firefighter data are appropriately safeguarded and utilized. Leaders had more concerns about data use and data sharing, attributed in part to anticipated firefighter privacy concerns, whereas firefighters held general preferences for deidentifying data and limiting sharing, particularly for sensitive information, such as mental health data. Both groups called for improved data communication.

Interestingly, leaders in our sample voiced more concerns about current data practices than firefighters, and leaders were more attuned to the need for and barriers to ethical data collection, use, and sharing. This might reflect the fact that leadership was more likely to encounter diverse views on data than firefighters working in a single fire station or to hear concerns held by a small number of firefighters but elevated to management. It might also reflect the responsibilities that accompanied their roles—leaders who regularly interacted with firefighter data, or who were responsible for policy implementation, may have had more opportunities to consider the ethical and legal obligations surrounding such data. This aligns with research from our study team examining perceptions of the value of data in the fire service, which found that fire service leaders identified more use cases for occupational health and safety data than firefighters [27]. Leaders were likely more familiar with occupational health and safety data, more likely to value it, and therefore more likely to have strong views on the privacy of that data. Although leaders had more specific concerns about privacy practices than firefighters, both groups identified opportunities to limit access to sensitive data and improve communication.

The launch of new systems, such as NERIS, offers opportunities to adopt a “privacy by design” or “value-sensitive design” approach in which safeguards for privacy or other values are built directly into digital health systems [28-30]. Privacy by design focuses on privacy protections, whereas value-sensitive design accounts for moral values such as privacy, in addition to other values such as ease of use or safety benefits. Value-sensitive design may be a useful framework for fire service technology developers, who may be designing technologies to enhance one moral end (eg, protecting worker health and safety) but need to balance other moral values (eg, protecting privacy) and practical design considerations (eg, usability of a smartphone app for firefighters to track injuries).

For instance, firefighters in our sample expressed hesitancy to share sensitive information about their mental health despite recognizing a need for more mental health research and screening. A value-sensitive mental health data collection system in a mobile app could be designed to anonymize responses, impose limits on collecting sensitive data (eg, suicidal ideation), or place limits on who has access to this information (eg, union leaders instead of department leaders). Leadership identified a broader array of potential data protections, such as limiting identifiable data collection and avoiding punitive use of health and safety data. The developers of digital health interventions for the fire service could take these preferences into account. For example, the developers of data surveillance systems, such as NERIS, could address these priorities by limiting the collection of identifiable information when gathering population-level injury data. Fire service technology companies could design wearable devices and smartphone apps that incorporate privacy features, such as allowing firefighters to opt into sharing specific identifiers or kinds of data with developers, their employers, researchers, or government officials. While these findings have implications for a range of digital health technologies and developers, fire departments, researchers, and government agencies can also help develop policies and practices accompanying these technical safeguards to ensure that health and safety data are used in protective, not punitive, ways.

Our findings also emphasize the importance of transparent and high-quality communication about firefighter health and safety data, both in research and practice settings. Many of the firefighters we spoke with were broadly supportive of research on topics, such as cancer, but were apathetic about their own contributions. Several described their frustration that after sharing sensitive information, such as symptoms of psychological distress or biospecimens, they never heard about the purpose or outcome of a study in which they participated. There are clear and well-established ethical imperatives for communicating the purpose of a study to research participants [31]. Our findings suggest there is strong demand from firefighters for researchers to clearly communicate about the objectives and conclusions of their work. Understanding these kinds of communication best practices will be particularly important as the National Institute for Occupational Safety and Health rolls out the National Firefighter Registry, a national-level longitudinal research effort. There are fewer well-established norms for communication about this kind of public health surveillance as opposed to individual research studies. Additional research on this topic could help establish guidelines on if and how firefighters want to receive information from surveillance activities such as the National Firefighter Registry.

Communicating individual research results is a more complicated endeavor; there is robust debate about when it is appropriate to return individual research results to participants, based on the kinds of data in question and how results might be communicated [32,33]. However, there is growing consensus that study participants want to receive medically significant and actionable findings, which is consistent with the views of firefighters in our sample [32,34]. While researchers cannot always ensure that findings are translated into practice, they can commit to providing research participants with individual results that might increase awareness about their own health and to sharing the conclusions of a study. Research ethics literature offers best practices for how researchers can communicate with participants, including offering context, using clear and simple language, and providing opportunities for questions [35,36].

Our findings also reveal the need for more research on the best manner in which to return health or medical information collected in occupational settings (not for research), for instance, from an annual physical exam or a department-led safety initiative. Researchers and employers operate in different environments, and the nature of data collection will vary accordingly. For example, firefighters may be required to participate in an annual exam as part of the terms of their employment, whereas research participants voluntarily enroll in a study. Research studies aim to produce generalizable knowledge and societal benefits, whereas a department’s safety efforts might have limited population-level benefits. More work is needed to determine the ethical obligations of employers in communicating health and safety data to their employees. Ensuring ethical, high-quality communication about these kinds of data may not only benefit individual firefighters but could also help bolster trust in data collection efforts within the fire service writ large.

Finally, our findings reflect a need for robust ethical guidance on how to appropriately handle health and safety data in occupational settings, including the establishment of ethical principles as well as detailed, practical guidance on privacy topics. Although our participants did not raise major alarms about unethical data practices, they described legitimate concerns about ensuring firefighter data privacy while calling for large amounts of new data collection. The concerns that health and safety data could be used in punitive ways—to fire someone or change their job responsibilities without cause—reflect serious potential repercussions from insufficient data privacy protections. A few experts have discussed the need for confidential data practices for health and safety data, but guidelines for ethical data practices in any occupational setting remain general [37]. The COVID-19 pandemic revealed the need for ethics and data governance guidance for employers, as they began to deploy biometric screenings and digital contact tracing apps to attempt to control disease spread in workplaces, often with little ethical guidance [38,39]. While there were efforts to develop guidelines specific to COVID-19 [40], more work is needed to establish guidelines for the routine collection of occupational health and safety data, outside of a public health emergency. The continued refinement of ethical frameworks specific to occupational health and safety, as well as practical guidance on how to implement these frameworks, will help employers implement new data efforts in an ethical manner.

Our results should be interpreted with several key limitations in mind. Our findings reflect the specific geographic regions and fire departments in our sample. Fire departments were recruited from study team networks and had previously participated in research, which may have influenced their views toward research and data privacy. We encountered recruitment challenges in Maryland that limited the size of our firefighter sample in that state. We found similar results across Maryland and Virginia, but a larger sample may have captured additional viewpoints. Attitudes toward data privacy may differ based on department culture, trust in leadership, staffing (eg, combination, volunteer, or career), and geography. Future research should explore this topic in a wider range of departments. Our sample was also largely White and male. While this reflects the overall demographics of the fire service [26], evidence from other settings suggests that women and racial minorities experience data and technology in distinct and often inequitable ways and thus may have unique privacy preferences [41-44]. More research is needed to understand how perspectives on occupational health and safety data privacy might vary based on gender and race.

Our findings offer insights into pathways for enhancing firefighter data privacy. Incorporating firefighters’ privacy preferences into digital health data systems, for instance, by deidentifying firefighter data and limiting data access, may build confidence and trust in data collection efforts. Improving communication about data will address firefighters’ desire to hear more about the purpose and impact of data collection. By addressing firefighters’ privacy concerns and conducting high-quality, tailored communication, government, research, and department-level leaders can foster trust in data collection efforts and ensure that firefighter data are used in ethical and acceptable ways to protect their health and safety.