Does Prevention Justify Total Control? Data And Ethics During Health Emergencies

29 September 2022
While some people during the COVID-19 pandemic followed all the recommendations from public health authorities and restrictions introduced by governments to keep the pandemic under control, some felt their freedom had been violated. It often led to a growing divide in societies, the spread of fake news, and challenges regarding pandemic surveillance by public authorities. Some public health measures raised difficult ethical questions about balancing individuals' rights and the common good. The problem is highly complex, including issues like trust in science, civil society, and health literacy. We've also realized that there is no one-fits-all model: every country needs a different code of conduct and legal framework under a new social contract to manage health emergencies. It's getting crucial since using data – one of the most sensitive assets – in the digital age can save lives and violate privacy. During the European Health Forum Gastein 2022 (26-29 September, Bad Gastein), experts from national public health authorities and governments, WHO, and European Centre for Disease Prevention and Control (ECDC) tackled the ethical dilemmas during health emergencies. Their conclusion: it pays off to strengthen preparedness, including (digital) health literacy, then facing the challenge of introducing measures that always will be controversial. "We have to consider conflicting priorities and rights of people, and there is a no-one-fits solution for this. For example, pandemic preparedness and surveillance are one thing; another is communicating it correctly. So maybe we should create an agency that will address the issues of solidarity in health?" asked Kaisa Immonen, Director of Policy at the European Patients' Forum.

Ethics and data preparedness

Karin Tegmark Wisell, Director General at the Public Health Agency of Sweden, said bluntly: "There is always a cost when we have a pandemic." During such a health emergency, we can't follow the rules of "business as usual": There will always be losses, sometimes health-related, sometimes economic, and occasionally mental, or regarding democratic principles. When it comes to digital tools used to spread the COVID-19 pandemic – like contact tracing – many feared that data could be used for a purpose other than to fight the pandemic. Even if the digital tools prioritized anonymity and the highest data protection measures, it soon became apparent that the technological aspects of data security played only a minor role. More critical was trust in the authorities or governments launching the contact tracing apps. "In the first wave of the COVID-19 pandemic, many member states didn't even have legislation in place for processing data for public health-related purposes," said Ludovica Banfi, Programme Manager at the European Union Agency for Fundamental Rights. It also undermined trust, mentioned by Andreas Reis, Co-Lead of the Health Ethics & Governance Unit at the World Health Organisation, as the critical determinant of solidarity. The role of trust was visible in the uptake of the COVID apps in different EU member states. In some countries, it reached 60-80%, but there were also countries where only a tiny percentage of citizens decided to download them. The technology and data protection measures were the same in most countries, but there were considerable acceptance gaps. Trust is also relevant in many other issues: adherence to social distancing, coping with pandemic fatigue, compliance with the rules of social isolation, and vaccination. Second, no matter what measures are needed to address health emergencies, we should carefully analyze their impact. Health is a priority, no doubt, but we also saw that every intervention could influence many other aspects of life, from economic to social ones. "Impact assessment has to be more holistic," highlighted Andrea Ammon, Director of the European Centre for Disease Prevention and Control (ECDC). Prioritizing only health and ignoring other consequences of measures introduced to curb the pandemic spread didn't work.

Get ready before the problem arises to avoid some of the ethical dilemmas

But what's even more important, we have to start preventing health emergencies instead of dealing with them; this could also help avoid some complex and ethically controversial decisions. This topic was raised later in the new EU Global Health Strategy session. "We shouldn't be in the reactive mode anymore," according to Sandra Gallina, Director-General in the European Commission Directorate-General for Health and Food Safety. An example is GDPR which turned out to be a good umbrella for protecting data needed for pandemic surveillance. But for strengthening future preparedness – since it's not the first and not the last pandemic – we also need to enhance digital health literacy, create a framework for trustful mobile health apps, make data gathering and re-use more transparent, and invest in tech-savvy societies. These issues will become even more critical as the next pandemic or healthcare emergency will probably happen in more digitalized healthcare than today. And many of the ethical dilemmas will relate to data and privacy. The conclusion: in data-driven healthcare, future pandemics probably will be pandemics controlled and managed using much more technologies. We must invest in infrastructure, data gathering and processing transparency, and education (digital health literacy). This is how trust can be built.