Balancing data rights is about protecting human rights
There are no right answers in the debate between data access and privacy. Image: Getty Images/iStockphoto
• Striking a balance between data access and privacy is tricky.
• Different approaches to the problem can either reinforce or redress existing power imbalances.
• Discussions are progressing about the institutions needed to achieve balanced data rights.
2020 was a year like no other. Amid many other lessons, the crises of the last year showed once and for all that how we manage and use data can both save and destroy lives.
As the founder of the Open Data Charter, I have campaigned for a fairer balance of data rights for a decade. It has not always been easy to convince governments that decisions regarding how data is collected, shared and used have stark human consequences. Why should we invest time in publishing all this intangible information, they ask, when we have more pressing problems like recessions and climate emergencies to deal with?
I hear different questions now. Like: How do we get timely data on the pandemic from elsewhere, in a format we can quickly understand, act on and share? How do we strike the balance between using data to inform urgent initiatives that can save lives, while also protecting privacy?
There are no absolute right answers. Some governments have successfully used data to understand and explain to their public what they are doing and why, and allayed well-placed concerns about what happens to this data in future. In New Zealand, the central government has developed a simple dashboard that pools data from public and private sources to track and communicate the impact of the pandemic against a range of economic and social indicators. Cities like Wellington then used the info to develop interactive maps showing what support services are available locally, while private individuals have developed their own visualizations that help New Zealanders understand what is happening.
Elsewhere, other cases show striking a fair balance of rights is tricky. For example, Singapore and South Korea published detailed personal data about every coronavirus patient, including where they work and live and whether they had contact with others. This helped them keep infection and death rates low, but led to concerns people might be targeted and harmed, or about government overreach with the data being handed to police. Similarly, Thailand has struggled to get enough citizens to use its contact tracing app for it to be effective, largely because of concerns over privacy. And global powers like the UK and US have been hampered by lack of consensus on the best way to collect and use data, especially when working across borders, jurisdictions and political differences.
It’s not just COVID that shows we have to work to get this right. The Black Lives Matter movement laid bare how data can reveal patterns of institutional racism – or be used by police to profile by race and entrench discrimination. And we increasingly see how access to the right kind of data can make or break countries' efforts to monitor and tackle things like the economic fallout of gender pay gaps and air pollution due to climate change.
We can now see that data rights are closely connected to some of the most pressing human rights issues of our time. Our approach can either reinforce or redress power imbalances and injustices. As we rebuild from the pandemic, governments have a unique window of opportunity to implement more sophisticated, fairer policies on this front. It will not stay open forever.
There is no simple, one-size-fits-all solution. Some data should be open by default, some kept closed, and some sensibly shared. We need to find a balance between openness and privacy, which protects both individual rights and society as a whole. Laws and regulations should define and protect this balance, creating and resourcing strong institutions to govern it intelligently and accountably, and working with a wide range of communities to understand how risks and benefits differ by situation. Getting this right is a key facet of a government’s duty of care to its citizens in the digital age.
It will not happen by itself. It will require institutions and norms whose organizing principles are based on transparency, accountability and equity, which reflect the needs of people and communities around the globe and can be adapted to specific contexts. At the Open Data Charter, we experienced a miniature version of this process early in 2020. We worked with a wide range of groups to establish common principles that balanced openness and privacy, and signalled the need for radically democratic practices. When the COVID-19 crisis hit, we were able to work with the OECD Digital Government and Data Unit to jointly identify the types of data needed to improve readiness for, response to and recovery from the pandemic. Up-front work allowed us to quickly balance the immediate benefits of open data in fighting the pandemic against the need to establish guardrails that protect people’s privacy and security in the longer term.
There is increasing focus on these questions. A packed global agenda of discussions around how to use open data to address local challenges at our recent Open Data Day show the diversity of issues it touches. We ourselves will be driving forward work focusing on opening data to close gender pay gaps with the government of the City of Buenos Aires, and have recently published research with the World Resources Institute, showing how lessons from using open data in Chile and Uruguay can guide efforts to tackle climate change.
What is the World Economic Forum doing about healthcare data privacy?
Governments and their citizens can no longer avoid these questions, as we work together to tackle climate change, racial injustice, gender inequality and other defining challenges of our age. We need to establish policies and practices that show how to govern data for the public good, while keeping those in power in check. This kind of commitment can help restore public trust and maximize benefits, from closing gender and racial gaps to dealing effectively with future pandemics. It will not be easy, but it will be worth it.
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Michelle Meineke
November 22, 2024