Ethical Considerations for Collecting and Managing Data for Total Worker Health
This blog post is adapted from a presentation given by Donna Heidel, Emanuele Cauda, and Lisa Greene at AIHce EXP 2020 and from conversations with Emanuele Cauda and Lisa Greene that took place on Sept. 18, 2020, and Sept. 23, 2020, respectively. It is part of an ongoing series on Total Worker Health.
Industrial hygienists benefit from using advanced sensor technology to track worker exposures to chemical and physical hazards or other health and safety conditions. However, if IHs intend to use sensors to collect personal data, including personal health and wellness information, to pursue any health- or safety-related goal, they must determine if there are ethical concerns before they start the program. Who will use or have access to the personal data collected by sensors? What personal data should IHs have access to in the first place? How is it ensured that the data will be used correctly and that the workers’ privacy will be protected? IHs must answer these questions and many others before they start a sensor program in their workplaces.
“Right Sensors Used Right”
The Nov. 19 blog post referred to a sensor that workers wore against their bodies while performing work tasks. Wearable sensors are data-collection devices that don’t add significant mass to the worker, but the amount of mass that could be considered “significant” is subjective, depending on an IH’s purposes and perspectives.
Sensors may also be attached to or even implanted inside a worker’s body to measure biometric data such as heart rate or insulin levels. But while attachable or implantable devices are necessary for many medical interventions, the intrusive medical procedures required to install them mean they are not often the practical choice for an IH’s purposes related to workplace health and safety.
“We should tend towards the least intrusive means,” said Emanuele Cauda, PhD, AIHce presenter and director of the NIOSH Center for Direct Reading and Sensors Technology. He means that, on principle, IHs should prefer interventions that change workers’ routines as little as possible. IHs should choose sensors that impose the least amount of hardship on workers during data collection.
To do this, IHs must know the weaknesses, limitations, and strengths of the sensors they intend to use and how they help the IHs meet their objectives. Every sensor has a degree of “over-communication,” meaning that it collects data unrelated to what the supervising IH is attempting to measure. This data may indicate unacknowledged risks or exposures, but it may not be as reliable as whatever type of data the sensor was designed to collect. IHs should understand precisely the kind of data collection for which the sensor in question is best used. Emanuele Cauda referred to this idea as “right sensors used right.”
Outside professionals that IHs may consult during the sensor selection process include other health and safety professionals, workers, employers, sensor manufacturers, researchers, IH professional associations such as AIHA and ACGIH, and bodies such as NIOSH and the Department of Labor.
Meanwhile, IHs can take a step toward selecting the right sensor by formulating a clear objective for the data collection. This objective is the IH’s purpose for using the wearable sensor in the first place—it could be for alerting the wearer to hazards, mapping exposures, evaluating the effectiveness of administrative or engineering controls, assessing risks or exposures, monitoring for compliance, or evaluating health conditions. Understanding what they are looking for helps IHs choose the most reliable sensor for collecting the relevant data.
“We need to be very aware of exactly why we are using a specific technology,” said Cauda.
Still, even with the right sensor, a chance remains that it will pick up data the IH did not intend to collect—in that case, what should IHs do? Should they find another sensor better suited for measuring the accidental data in question? Should they alert their employer to another potential hazard, even if they have not adequately observed and analyzed it? There is not always a clear answer, but the IH should err on the side of minimizing harm and adverse consequences, in this as in all other stages of the data collection process.
Untargeted Analyses and Other Ethical Gray Areas
It is easiest to choose the right sensor for the right situation when an IH has a good idea of what sort of risk or exposure he or she is looking for, but this is not always the case. “Untargeted assessments” occur when workers, employers, IHs, or some combination of those groups suspect that some workplace condition is negatively affecting worker health, safety, and well-being, but do not know for certain what it is.
Lisa Greene, director of quality operations at RTI international, who co-presented at AIHce EXP 2020 with Emanuele Cauda, related the story of an office building in which three female workers, who happened to sit near each other, were diagnosed with breast cancer. A fourth worker brought it to the attention of the building owners, who hired an IH consulting firm to investigate. The consulting IHs did not know what the carcinogenic exposure was from or even know for sure that there was an exposure when they began to collect samples and look over employee health records.
When using wearable sensors, which can measure and store workers’ most private data, IHs must take even more precautions than they do throughout traditional investigations. Because sensor technology is evolving, the profession has not yet resolved many ethical questions related to their use, and IHs will have to use their judgment when navigating them. The IHs investigating breast cancer among office workers navigated the ethical dilemma by developing a goal for the intervention: to identify, if possible, a health risk to the employees and protect the enterprise. Above all, IHs strive to protect worker health, and all steps of the data collection process, whether sensors are used or not, must be taken with this end in mind.
Acknowledging the primary goal of protecting worker health will help an IH negotiate many other ethical gray areas encountered while collecting data, with or without using sensors:
- What should an IH do when worker health complaints are vague and don’t point to any specific risk or exposure—for example, complaints of dizziness, which could result from anything from sick building syndrome to worker anxiety?
- What if a worker doesn’t want to disclose information for fear of work-related penalties, and how will discriminatory use of workers’ data be prevented?
- Who aside from the IH will have direct and indirect access to the data, and what are their priorities?
- Who owns the data or the information derived from it?
Consent, Citizen Science, and TWH
IH professionals can mitigate some ethical uncertainties by obtaining workers’ consent for data collection and ensuring those workers understand thoroughly what they have consented to. Consent is when an individual explicitly agrees to and understands the uses, benefits, and risks of a procedure, technology, or intervention. The user agreements that have become commonplace in our technologically interconnected world do not truly provide users with informed consent as long as they remain densely written and easily skipped—IHs must do better than this on the job.
In obtaining consent, IHs must be fluent in the vocabularies of different interested parties, such as frontline workers, hiring managers, and executives who may not have IH or other technical training. Therefore, while an IH may not need to convey to workers all technical details concerning toxicology, statistical analysis, sensor operation, and so on, workers still must understand how and for what purpose the data is being collected and used, who owns it, and who can access it. Consent forms should be written in plain language that conveys necessary technical detail while remaining easy to understand. IHs should reassure workers that the intervention is for the benefit of their health, safety, and well-being and that the information will not be misused.
When workers understand and willingly partake in data collection, they become part of the “citizen science” phenomenon: research partially conducted by people who are not professional scientists. Done correctly, recruiting workers for data collection may encourage their investment in occupational health, safety, and well-being efforts. In turn, this helps IHs meet the Total Worker Health objective of developing policies, programs, and practices tailored to individual workers’ health, safety, and well-being needs. But as IHs’ work expands outside the bounds of traditional industrial hygiene, they will encounter unfamiliar ethical territory.