Confidentiality, Privacy and the Protection of Children’s Data

This guidance paper discusses issues of confidentiality, privacy and data protection in relation to the collection of information from or about children for research.

Research participants are entitled to privacy, confidentiality and anonymity, but what do those terms actually mean?

• Privacy: this is the right to keep things ‘private’. It is protected by international human rights law, in particular by Article 8 of the European Convention on Human Rights and Article 16 of the UN Convention on the Rights of the Child 1989.This means that personal information about research participants (their names, where they live, details of their family) are for the researcher’s information only and should only be revealed to third parties with the explicit consent of participants (see Guidance Paper 2 on obtaining consent).
• Confidentiality: Confidential information usually comprises information that is not publicly known and is being disclosed to an individual (i.e. the researcher) with the expectation that it should not be disclosed to anyone.
• Anonymity: information disclosed in private or in confidence may be anonymised, i.e. redacted or changed so that that it will not be possible to identify those involved. In some cases, young research participants may want to have some means of identifying their contributions to research findings. Encouraging participants to choose their own pseudonyms may be an alternative, as it will still allow participants to do this without breaching their anonymity and confidentiality.

This paper is Guidance Paper 6 in the series The Ethics of Research Involving Children: Common Questions, Potential Strategies and Useful Guidance.

Read the paper, Confidentiality, Privacy and the Protection of Children’s Data