Public health systems need a large amount of information to deliver an accurate service. This includes ‘pure’ research but also standard public health practice, such as health monitoring and surveillance systems, evaluations of existing health services, and data collection during disease outbreaks and health emergencies.
However, ethics of public health data collection is an under-explored area. In existing literature, there is a focus on ethics more generally in fields such as biomedical research, which primarily look at clinical trials, but there is a lack of work exploring the ethics in public health research and practice.
One obstacle contributing to this imbalance is the fact that public health data can potentially be very sensitive.
We conducted extensive research into this area and argue that there should be ethical oversight and governance of all public health information gathering and not just ‘pure’ research.
Health monitoring systems and health service evaluations can generate ethical concerns, so should be properly scrutinised.
Our research also explored the general dilemma between protecting privacy rights and the social benefits of public health data.
From our findings we argue that privacy concerns around public health information are systematically overstated and the resources available to justify public health information gathering are systematically understated.
We conclude that while all public health information is ethically relevant, only some of it generates ethical concerns sufficient to warrant scrutiny and approval.
Before setting up the Research Ethics and Governance Group (REGG), Public Health England’s research and information-gathering practices were not subject to ethics review. The REGG was set up by Professor Stephen Holland and is based around the principles outlined in his research.
REGG now reviews all Public Health England’s data collection, including both ‘pure’ research and public health practices.
In-keeping with our research findings about the privacy-utility dilemma, not all data collection creates serious risks of harm or other ethical concerns, so the REGG's review is only required for projects that meet certain criteria.