To what extent are our current systems for ethical engagement with young people covering all the bases? What do young people think are the ethical issues raised by their involvement in research and service design? AYPH’s Dr Ann Hagell introduces new resources published today.
Young people’s role in both research and service design has modernised in recent years. Expectations around involving users have substantially evolved. Engagement, patient and public involvement, co-production, and co-design – these are all critical to enriching our research and improving service delivery.
However, at the moment the way in which we approach ethics in relation to young people’s participation varies hugely depending on what kind of activity they are engaged in. On one hand, the ethical frameworks employed often have their historical roots in academic medical trials where harm might be quite likely. This has led to a framing of ethics as being mainly about risk rather than rights and opportunities. On the other hand, there are some outstanding gaps in how we apply ethical principles to some other kinds of participation over and above traditional research. Where guidelines do exist – for co-designing services with young people, for example – there is little meeting point between these and traditional research ethics.
But to young people this may all be literally rather academic. They are simply helping us with our work; they may not know how we classify the activity in our own minds. In addition, it is critical to move beyond viewing ethics approval as something that researchers have to ‘get through’ before projects can start. We need ethics that can be extended and developed to handle more iterative and dynamic ways of involving young people in research and service development.
In this AYPH project we took a look at existing research on how we tackle ethics across the board in relation to our engagement with young people, looking both at existing research and also talking – with our partners Common Room – with young people about what they thought was ethical engagement. Based on our desk based review, 20 interviews with young people, and a workshop with stakeholders, we’ve raised some questions about how to tighten up our approach to all this. We identified key constructs and outlined emerging issues and contradictions in terms of their ethical engagement, and we identified some knowledge gaps. We also assessed the suitability of existing ethics frameworks for youth participation, in the light of these gaps.
Following on from this project, throughout 2022 AYPH will be working with young people and health researchers to develop training on ethics and engagement of young people in health research. If you’re interested in getting involved in this please contact firstname.lastname@example.org.
Finally, if you look at just one bit of this, we urge you to check out the 10 top tips for ethical engagement from the young people (in the briefing paper).