Quiz: The ethics of public health surveillance
1 Is it ethical for doctors to provide individually identifiable data, including names and other socio-demographic characteristics, to health authorities to monitor flu outbreaks?
In some instances, the collection of names or identifiable data is both technically and ethically required. Effective surveillance may require the de-duplication of records (that is, avoidance of double-counting, which can lead to overestimates of incidence or prevalence).
Responsible data collection and sharing practices should ensure the security of the data collected in order to safeguard the privacy and other interests of the individuals and communities concerned. In particular, sensitive information that raises the risks of stigmatization or discrimination, should be subject to specific and especially rigorous security safeguards.
The WHO Guidelines on the Ethics of Public Health Surveillance provide an overview of when name reporting is or isn’t ethically acceptable.
2 Should participants in public health surveillance always be asked for their informed consent?
Informed consent is not the norm in public health surveillance. For surveillance to be effective, it needs to have the fullest picture possible of population health. If individuals are given the choice to opt-out of surveillance, this compromises the quality of data and efforts to limit disease spread. However, as far as possible, participants should be informed about the activity. In exceptional cases, such as when surveillance involves serious risks for participants, they should give prior informed consent.
The WHO Guidelines on the Ethics of Public Health Surveillance provide detailed information on when informed consent is needed in surveillance.
3 Must participants in HIV surveys be informed about their status?
There is an ethical obligation to inform participants of their health related results, so that appropriate follow-up actions such as referral and treatment can be taken.
The WHO Guidelines on the Ethics of Public Health Surveillance highlight the importance of informing consenting individuals of the results of surveillance, and referring them for follow-up in the case of positive results.
4 Which of the below is NOT used for public health surveillance activities?
The ubiquitous use of personal computers, smartphones, wearable devices, closed-circuit cameras, genetic sequencers, semi-autonomous drones, and other technologies means that we produce a steady stream of digital data that can be useful for informing public health surveillance. However, they raise a host of ethical concerns.
The WHO Guidelines on the Ethics of Public Health Surveillance acknowledge that ethical issues raised by new technologies need to be addressed as the boundaries of surveillance shift.
5 Can public health surveillance harm people?
Although not necessarily a harm in itself, public health surveillance can trigger interventions that infringe on privacy and liberty. For example, surveillance might trigger contract tracing, quarantine, or mandatory vaccination or treatment.
That doesn’t mean that surveillance, intervention, and clear communication about the results of surveillance shouldn’t happen. But it does mean that those responsible for surveillance need to anticipate the risks of harm in advance, identify groups who are particularly susceptible to increased harms from disease, stigmatization, or discrimination; monitor constantly for harm; do whatever is possible to mitigate harm; and communicate in a sensitive and responsible manner.
The WHO Guidelines on the Ethics of Public Health Surveillance provide solutions to mitigate surveillance-related harms.