The use of legal grounds 'public interest' and 'consent' when collecting personal data

Various reasons for consent

When doing research with human participants, researchers typically request consent from the participant before collecting any data. When collecting personal data, this consent is twofold. You request consent for:

  • Participation in research. This is where you ask the participant to agree to take part in the study. You ask this permission on ethical grounds.
  • Processing of personal data. Hereby you ask the participant for permission to process his or her personal data. This is a permission you have to obtain under the European privacy legislation (GDPR).

For both types of consent, you must provide sufficient information tailored to the participant so that they can make a free decision based on the necessary knowledge.

Active versus Passive consent

In some exceptional circumstances, however, seeking consent from participants may be problematic. For example, in research with (young) children, consent is given by the parents or guardians. However, with older children, ‘passive consent’, or ‘opt-out consent’, is sometimes used. In this case, the parents or guardians are given all the necessary information, and if no objections are reported, the researcher assumes consent. For some sensitive issues, the consent of the parent or guardian is even not requested at all, as this could violate the privacy of the minor.

From an ethical point of view, this choice can sometimes be justified. When the justification allows for it, deviations from active consent to participate can be approved by the ethics committee.

However, there is a problem with the legal approach. The privacy legislation (GDPR) prescribes that any consent to collect personal data must be given ‘active’. This cannot be deviated from if one wants to work with 'consent' as the ‘legal basis’ for processing personal data. Moreover, the GDPR does not provide that minors themselves can consent to have their personal data processed in the context of research.

When (active) consent is problematic

If asking (active) consent for the processing of personal data is problematic, consider the following solutions:

  • Anonymous data: A first possibility is to design your research in such a way that you do not collect or process personal data. You will then be working with anonymous data, which means that the GDPR privacy legislation does not apply. Note: when you collect personal data and later anonymise it, the GDPR does apply. For more info see this research tip.
  • Reorganise: See if you can organise your research so that the use of active consent is feasible.
  • Public interest: according to the GDPR, you need a legal ground for the lawful processing of personal data (see this research tip). For research at UGent, the preferred legal ground for collecting and processing personal data is ‘consent’. This means that you have to ask the persons concerned (or their parents/guardians in the case of minors) ‘active’ permission for the processing of their personal data. In exceptional circumstances, however, it could be considered to process personal data based on the legal ground of ‘public interest’. However, there must be a detailed justification as to why this is necessary. With this legal ground you do not need to ask permission for the processing of personal data. Mind you: from an ethical point of view it will usually still be appropriate to ask for consent to participate in the research. This can for example be done on the basis of passive consent by the parents/guardian when the research involves minors.

Procedure to use legal ground public interest

The procedure for using public interest as a legal ground for processing personal data in the context of scientific research starts with an application to the ethics committee. The faculty ethics committee has no legal authority. It is therefore important to make a clear distinction between the ethical part and the legal part in your application.

Because a positive ethical opinion is necessary to invoke ‘general interest’ as a legal ground, the ethics committee follows the following procedure:

  • When you want to use public interest as a legal ground, you first need to draw up a comprehensive justification (see below for examples). In this justification you explain why the legal ground of public interest is necessary for carrying out the research. This justification has to be added to the application file for the EC.
  • Thereafter, your file is assessed separately and in parallel by the EC and the Data Protection Officer (DPO). During this evaluation you may need to answer additional questions from the EC or DPO.
  • There are three possible outcomes:
    1. The EC gives a positive advice on ethics. The DPO gives a positive advice concerning the use of 'public interest' as a legal ground. Subsequently, the EC gives its final approval of the whole file, and the research can be carried out.
    2. The EC gives a negative advice. Irrespective of the DPO's opinion, the research is not approved.
    3. The EC gives a positive advice on ethics while the DPO gives a negative advice on the use of 'public interest'.

In situation 3, the Faculty Research Director is consulted by the Ethics Committee. The purpose of this consultation is to ascertain (a) to what extent the proposed research design meets the current quality criteria for research, (b) whether the research serves a public interest, (c) whether the research is necessary, and the results cannot be achieved by any other method, and (d) whether there are sufficient guarantees that the risk of privacy violations is limited.

On the basis of this analysis, the Faculty Research Director shall advise on the desirability of conducting the study. This advice is submitted to the Faculty Board, which gives a final recommendation. A positive advice allows the responsibility concerning the objections expressed by the DPO to be shared between the researcher and the faculty.

Depending on the complexity of your file, the procedure to use public interest can significantly delay the handling of your application by the EC. It is therefore a good idea to request support from Jan Lammertyn before submitting your file.

Interesting links and examples