We share a lot of personal information through digital channels, ranging from automatic bank transactions to search engines. However, the collection, storage, analysis and use of large amounts of personal data raise acute ethical and societal questions.

Jeroen van den Hoven, professor of Ethics and Technology at Delft University of Technology and involved in NWO-MVI from its conception in 2008, is chairman of the Big Data and Privacy expert group established by the Ministry of Economic Affairs.  At the University of Groningen, a team led by Ronald Stolk, professor of Clinical Epidemiology with expertise in big data, is carrying out research within an NWO-MVI project into how to encourage people to take part in large data collection studies that explore the benefit of healthcare innovations. In the NWO-MVI SCALES project, a team led by Bibi van den Berg of Leiden University is focusing on the responsible processing and use of big data.

Lighting up the digital shadow

This Big Data and Privacy expert group report (Licht op de digitale schaduw) focuses on the Dutch business sector. Its authors observe that it is essential that people trust technology and the parties responsible for implementing technologies, and that companies are aware of this. The expert group recommends that companies ensure responsible innovation using big data. Chairman Van den Hoven: “It is about looking for smart solutions that combine the commercial or other possibilities of big data with individual values. It is about solutions that unite economic growth and sustainable development while taking into account security, privacy, efficiency and responsibility. Any disruption to this balance will reduce the level of trust and create missed opportunities, while smart solutions will encourage innovation and protect consumers.”

Investing in privacy

In Groningen, Stolk obtains data from the Lifelines study. Lifelines began in 2006 and will follow 165,000 participants over a period of 30 years. Although still in its infancy, the study has already produced a notable result, says Stolk. “People seem to trust health researchers to handle personal information carefully, because of the principle of medical confidentiality. It is possible that people will therefore be more likely to take part in health research than in data collection exercises for energy or pensions, but this needs investigating further.”

“We ask a lot of these people,” continues Stolk. “Not only do we collect data on lifestyle and health through questionnaires, but we also take blood and urine samples on a regular basis. This really touches on the privacy of the participants. Of course, if they hear about data leaks on the news, they will wonder whether their personal data are really safe, and some may decide to stop.” Stolk interviewed participants and people who had decided not to take part in the study, to find out their reasons for doing so. “We do not just ask why they are taking part or not, but we also ask, for example, what their general opinion is of the government.” The researchers will use the research results to draw up guidelines on responsible data collection.

Finding a balance

Bibi van den Berg’s research team examines the balance between the benefit to society and the risks to individual participants with regards to the collection, storage, processing and analysis of data. There is a lot of legislation in place for data collection and storage; however, this project focuses specifically on the processing and use of data. Which processes based on data analysis should preferably be regulated, and why? Which of these lend themselves to regulation, and how? Is legislation required, or is it sufficient to adapt protocols or draw up behavioural codes? Do the algorithms used introduce undesirable effects that cause certain groups in the dataset to be wrongfully labelled as criminals? Ensuring as much transparency as possible about who may do what with data and when, while giving individuals as much control as possible over their own data, reduces distrust. Francien Dechesne, the project’s lead researcher: “Our aim is to develop a regulatory framework with guidelines and recommendations for developers and users in various sectors.”

Learning from smart meters

A textbook example of how not to go about it, she says, is the bill for the mandatory introduction of the smart energy meter ten years ago. “The general public was heavily opposed to the meters from the very start, because they were to be made compulsory while it was unclear what their purpose was and who would benefit most. Was it about energy savings for consumers? The incorporation of renewable energy sources into the grid? Savings for the network operators? Or, was it just another way for the government to increase its control? In particular, a study showing how data from the smart meter could be used to register all kinds of information about a household, such as which TV programmes were watched, fostered resistance.”

“As a consequence, the energy sector in the Netherlands has worked hard, in consultation with public parties, to meet the obligation that data collection should be purpose-bound. The standard smart meters installed in the Netherlands therefore provide far less detailed information and have fewer integrated smart features than meters in other European countries.”

The researchers from Leiden University plan to ask data analysts what opportunities they see in data and data analysis, now and in the future, and based on their experiences with technology and practice. What would they like to use data for, and what is stopping them? What do they consider to be the risks? The researchers will then identify the main issues and bottlenecks, based on several case studies in the fields of security and energy.