Guides, Examples and Vocabularies
Archiving data collected from minors
As a rule, the rights of a research participant remain the same regardless of the participant’s age. To ensure that research data can be properly archived for reuse, the research participants must be sufficiently informed about the important ethical and legal issues relating to the research. When data are collected from minors, it is important to ensure that they are given sufficient opportunity to make independent decisions and express their opinions on the research in general and the archiving and reuse of the collected data.
When considering the archiving and reuse of data collected from minors – and when conducting research in general – it is good to remember that research participants have a right to express their opinions and thoughts in, for instance, written, oral, or artistic form. Archiving data for reuse means that the life cycle of the data extends beyond the original research project. The potential archiving of data collected from minors should be carefully considered before starting the research process. It is possible, for instance, that a minor’s opinion on the reuse of their data changes as they mature. It is always important to explain what the reuse of research data means in concrete terms. Understanding the provided information is a minor’s right as a research participant.
Depending on the research design, informing minors about matters relating to the research may be carried out as a collaboration between the researchers, minors, and the minors’ parents or guardians. The aim of this kind of cooperation is to clarify who will make the decisions regarding the minor’s participation and what kind of information will be provided to each party in accordance with the legal requirements and ethical principles that guide all research. The ethical principles of research recognise a parent’s or guardian’s right to decide whether a minor should participate in research, but this does not mean that the minor does not need be informed. The minor always has an independent right to be informed about the research.
It is recognised that special protections should be afforded when processing the personal data of minors. Transparency is a key principle of processing personal data. In simple terms, transparency can be understood as the research participant’s right to receive clear and comprehensible information on the processing of their personal data. It is important that a minor is not deprived of the right to receive transparent information, particularly when decisions regarding the research are made by an adult. In practice, this can be achieved by always informing the minor about the processing of their personal data in a way they can understand.
What should be taken into account when planning the archiving and reuse of data collected from minors?
- Have the decisions been made by the right person? It should be ascertained that the decision to participate in the research, including the decision to archive the data for reuse, has been made by the right person after being sufficiently informed.
- Finding out the minor’s opinion. If the minor was not the one to make the decision about participating in the research, it is important to also consider their opinion on the archiving and reuse of the data to an extent that corresponds with their age and stage of development.
- Has the archiving and reuse of the data been explained clearly? The process of archiving and reuse of the data should be explained using language and terms (and if necessary, pictures, animations, or videos) suitable for the minor’s age and stage of development.
The above points are guided by the principle of respecting a minor as a research participant without discrimination.