But how can you judge if a child / young person is sufficiently aware of ‘stuff’ to be able to consent to including themselves in a research study? We are asked in the UK by many Ethics committees to provide assessment information for young children (<8yrs), older children (8-13yr) and young people (>13yrs). It’s almost always the parents who seem to do the deciding though. Could more be sat at the feet of the young people themselves?
A group in Europe used a questionnaire to assess how much young people did comprehend about the process. They followed this up with full on, structured, interviews to delve more deeply into it, and get a really better idea. Their work, reported at length here, shows that the questionnaire did a good job, but that simple age banding (<9yrs, very uncommonly, and >11.5yrs, almost always) was pretty much effective too.
Fundamental to this is a question of if we should be asking for their consent. This has different elements; an ethical one (“it’s just Fundamentally Right to include CYP opinion”), a ‘legal’ one (“the research code say I have to “) and and instrumental one (“my research is more likely to succeed if the CYP that can consent do so”). If you get into discussion/disagreements about it, then this may be a useful way of framing what aspect of the question – “should be asking for their consent” – is under debate.
– Bob Phillips