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Privacy in research: asking the right questions!

Date:29 August 2019
Marijtje van Duijn and Esther Hoorn
Marijtje van Duijn and Esther Hoorn

Esther Hoorn (Legal Affairs), Marijtje van Duijn (Associate Professor, Behavioural and Social Sciences/Sociology), Anne Beaulieu (Associate Professor at Campus Fryslân and Science & Technology studies) and Tom Spits (MOOC coordinator at the Center for Information Technology) have jointly submitted and been granted a proposal for the Comenius programme of the Dutch Research Council (NWO). We interviewed Marijtje van Duijn and Esther Hoorn about research involving personal data and the need to train good researchers.

What is your proposal for the Comenius programme?

The Comenius programme provides an impetus for educational innovation and improvements within higher education. The Comenius Senior Fellowship will allow our team to develop better ways of working with students on awareness about privacy in research. We have over two years in which to ensure that privacy in research is embedded in our teaching.

Data management plans and data protection impact assessments (DPIAs) have become established as research methods in recent years, in addition to ethical reviews. They have an obvious value because they allow us to make careful assessments at an early stage. Based on real cases, we will now train students in these methods in a bottom-up fashion. We believe that it is the most effective way to educate tomorrow’s researchers as well. The Comenius Fellowship has given us the funding to develop some relevant resources.

Why is there a need to train young researchers?

In the university world, the system is focused on publishing as quickly and as much as possible. This confers status and provides access to new research funding. It also means that researchers are irritated by anything that causes delays. But all these ‘delaying matters’ are what adds strength to their research. Communicating carefully about your research with the people involved, being scrupulous about collecting data, and thinking in advance about how it will be reused – all this may take extra time, but it will improve your research. By training young researchers in this way of thinking and rewarding the interest shown in this, you create responsible researchers for the future.

What frameworks for privacy, integrity, data handling, etc. are currently available to researchers?

Since 2018, a code of conduct has provided a national framework for reviewing and discussing research involving human subjects. It was developed by the National Ethics Council for Social and Behavioural Sciences (NEOSG) and adopted by the Deans of Social Sciences (DSW). The Netherlands Code of Conduct for Research Integrity also provides principles, standards and duties of care for responsible research. With regard to innovation, the DPIA method is included in the General Data Protection Regulation (GDPR). This is a multi-stakeholder assessment based on the principles of data protection. It helps to make the responsibilities of researchers transparent. The measures taken on the basis of this assessment can be recorded in your data management plan.

That’s an impressive set of safeguards for academic integrity. Isn't it enough?

Having them is one thing, using them is another. The Stapel Affair was both a curse and a blessing for the academic world. It destroyed the reputation of academic research, social psychology in particular, but it also put academic integrity firmly on the map. In its wake, it also put the spotlight on data handling, on making sure that data is always discoverable and verifiable.

The current reality of publishing quickly and copiously doesn’t help. Ethical scrutiny requires human effort and takes time. It’s not easy to organize a DPIA: it requires an interdisciplinary team and experience that is still under development. But it makes your research stronger and the ‘blind spots’ that all researchers have are picked up more quickly because of the different perspectives within an interdisciplinary team. The team that you build can also help you to make your research both innovative and socially responsible.

As a researcher, I just want to do research. Do I have to know everything about data management plans, the General Data Protection Regulation, etc.?

That question shows the precise mindset of the main character in the film we made for the e-learning material. That character teaches you how you can use this knowledge when designing your research study. We think that the best way to learn about this is in a multi-disciplinary team with legal, privacy and research data expertise. That's why, alongside the e-learning module ‘Privacy in research: asking the right questions’, we're going to work in the Comenius programme on supporting teachers in learning communities. We’ll use the e-learning material for students, but it is also helpful for researchers who are just starting out. The e-learning may not make you an expert, but it will teach you what you can expect as a researcher. And more importantly, where you can find support – in your own faculty, but also at the institutional level, for example at the RDO (Research Data Office).
For people who support researchers, it is also important to learn from different perspectives about how to get good advice on appropriate measures.

What do you have available now for research involving human subjects?

As we’ve said, we have developed an e-learning module, which can be completed in nine hours. You can find it on the Futurelearn platform. You can start at any time by emailing And for a DPIA, we have developed a role-play that we’ll use as a pilot for the Data Wise Minor. This new Minor will focus on knowledge about data and on skills to critically evaluate, shape and work with data. We will also run this pilot in Sociology, Spatial Sciences, Law and the Research Master’s programme in the Faculty of Behavioural and Social Sciences. We want to adopt a bottom-up approach and encourage student collaboration to ensure that the researchers of the future are best equipped in matters relating to privacy in research.

 Other online UG/UMCG courses on this topic:

 Or visit the research data management page of the Research Data Office.