Research with people and their data

Within the broad context of research ethics, Ghent University therefore wants to provide a guiding framework for anyone conducting research involving people or their data. Such research is very diverse: examples include surveys, interviews, behavioural experiments, observations, and clinical studies. 

Existing legislation regarding medically oriented research or the protection of personal data certainly does not cover all ethical risks that may be associated with all these types of research. Therefore, Ghent University finalized its Ethical code for research with participants and personal data in 2026.

Ethical risks

The topics covered or the techniques employed by researchers may give rise to a range of ethical issues. Protecting participants or data subjects is essential. The use of personal data can also be ethically sensitive, depending, among other things, on the nature of the data, the context, the persons involved, or the way in which the data were obtained.

In particular, the following situations and aspects deserve attention:

• Studies based on techniques such as deception, hidden research, internet research and collecting data on social media.
• Research on vulnerable persons or persons unable to give informed consent: some persons are inherently vulnerable (e.g. children, refugees, sex workers, dissidents, mentally challenged persons, traumatised persons, etc.), in others the context of the research leads to a certain vulnerability (e.g. in the case of a dependency relationship).
• The collection or processing of personal data always entails the risk that participants' identities and certain personal data may become known, leading to stigmatisation and discrimination, among other things.
  • Research that involves the collection of sensitive personal data and research that uses profiling, automated decision-making, data mining, systematic monitoring and artificial intelligence deserve extra attention.
  • Consider carefully the potential risks for participants when certain third parties are involved in the collection or processing of (sensitive) personal data or when the personal data end up in the hands of individuals or organisations outside the EU.
• Research in specific contexts or geographical regions that involve certain risks, for example conflict areas or regions with non-democratic regimes.
• Research that may cause physical or emotional discomfort or other negative consequences (e.g. intangible risks to personal social status, values or beliefs, to family and community ties, to one's position within a professional setting, etc.) in participants.
• Research in which unintended information may be obtained and require action: fieldwork, observations and interviews sometimes yield (worrying) information that the researchers were not looking for, but also psychophysiological measurements sometimes yield information on e.g. health risks.

An ethical code made to be used

The Ethical code for research with participants and personal data is a tool designed to be used: it informs you about good ethical practices, the limits of what is ethically permissible, and the mitigation of risks regarding participants and anyone whose personal data are used.

Ghent University thus works on a framework that clarifies when it is best to submit your planned research to a committee for an ethics review.

Ghent University staff can find more information about this on the intranet.