Okay – I’m copying over my thoughts from Slack. This is my personal thoughts & I welcome others!
No to non-parents working with kids; that’s research about patients, just as with adults. Maybe to parents doing research with their own children.
I think some core questions are…
- is this merely research on another person because you have the opportunity to study them?
- is the motivation related to child’s wellbeing and/or caretaking decisions?
- is the child given as much autonomy as possible?
I consider “self research” as a category to support the autonomy of individuals to engage in research about themselves. But there are people that don’t have autonomous capacity in full; to what extent they have it depends on age and disability. Parents and guardians are special stewards. (NOT therapists, etc.)
Ethical reasons to allow self-research comes from the individual’s capacity to understand the risks inherent in research they devise, and the inherent right for any individual to take a personal risk/cost to fulfill their own curiosity and seek answers. The latter justification isn’t present for parents: you don’t have an inherent right to place your child through risk/cost to satisfy your own curiosity.
BUT parents also have a responsibility to make the best decisions for their children, and we should support their capacity to seek answers for what is best. Some decisions are unavoidable – and which is best? Refusing empiricism is surely a worse choice, when a choice must be made regardless. (To make this less theoretical: many insulin loopers are parents operating the devices for their children. They want to the best possible treatment for their children’s T1D.)
Somewhere in between these is “harmless research for curiosity”. Is “people watching” self research? (It seems like it isn’t?) On the other hand, I think we could reframe many things as “self-research that tracks a parent’s experience of their own child”. (Do people smile at me when I smile at them? is that a self-research project? or am I studying them?)
I think we should trust parents to weight these ethical reasons themselves: that is their job. But hopefully the framing helps them think about it. To the extent that children are capable of autonomy, I think “self research” done by parents must incorporate the children – otherwise it is merely “research on another person because you have the opportunity to study them”.