In the following interview, social scientist Barbara Prainsack explains why we should use data for the good of society as a whole, and what form this should take.

Interview: Dietmar Schobel

HEALTHY EUROPE

Professor Prainsack, it’s often said that data is “the oil of the 21st century”. What exactly is data being used for these days?

Barbara Prainsack: We are living in an age of growing inequality. The way in which major technology groups like Google, Baido, Meta or Xiaomi – to name but a few – collect, process and commercialise data in general and health data in particular reinforces this trend. Laws and policies that try to address this by giving people more control over their data at individual level are important, but they cannot address the vast power asymmetries that exist between data subjects and data processors. This is what led me and other colleagues to develop the concept of “data solidarity”.

HEALTHY EUROPE

What does this concept involve?

Barbara Prainsack: The concept of data solidarity is rooted in the idea of “solidarity” as a practice that reflects people’s commitment to helping others with whom they recognise a relevant kinship. It can take place between individuals (tier 1), at group level (tier 2), or it can form the spirit of institutions and policies (tier 3). Solidarity is thus a concept that can bridge individual interest and collective goods. It does not, like some communitarian approaches, mean that public interest takes priority over individual ones. Applied to the data domain: Data solidarity means that individuals need to have control over how their data is used, but we also need better approaches for collective control, to ensure that structural issues are addressed. Risks and benefits from digital data use are distributed very inequitably at present, within and across societies. This needs to change.

We are living in an age of growing inequality.

BARBARA PRAINSACK, SOCIAL SCIENTIST

HEALTHY EUROPE

What exactly does this approach involve?

Barbara Prainsack: Data solidarity seeks to increase the public value of data use. The public value is high when the data use is likely to create a lot of benefit for people (and not only for companies), and when it does not pose high risks to people or communities. Data use that has high public value should be made easier than it currently is – e.g. by reducing regulatory requirements, and via public funding. Data use that has little public value – meaning that it creates little or no benefits for people but poses substantial risks – should be outlawed – with effective enforcement and fines that are severe enough to deter even powerful corporations from breaking the law. As well as this, benefit-sharing mechanisms should be put into effect to ensure that some of the profits gained from using commercial data are channelled back into the public domain that enabled it in the first place. One possible way of doing this is to tax company profits that result from commercialising data in ways that are not in the public interest. Moreover, mitigation instruments should be put into place for people who have been harmed by their data being used.

HEALTHY EUROPE

Could you give us an example of this kind of harm?

Barbara Prainsack: This could be caused by surveillance marketing, for instance. One example is described by US sociologist Mary Ebeling, in her book “Afterlives”. After a miscarriage, she kept receiving advertisements from companies congratulating her on different milestones of her unborn baby. Another example is false information about people in online platforms or webpages that they cannot realistically correct.

HEALTHY EUROPE

How should we deal with data usage that might potentially lead to significant benefits for the general public – for example, when it is used for medical research?

Barbara Prainsack: A key concern of data solidarity is that there should be more public support for data use that does not pose any serious risks and is likely to bring substantial benefits for the general public. In this way, data solidarity goes hand in hand with justice and helps it to take effect. To assess the public value of data use, colleagues and I developed a tool that is available for everyone to be used online.

Barbara Prainsack is Professor for Comparative Policy Analysis, University of Vienna, and Chair of the European Group on Ethics in Science and New Technologies.