Creative bites

Reconstructing Ourselves

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Art projects do not normally seek ethical clearance – but when should they?

Reconstructing Ourselves is an Arts Research project with patients and staff in complex breast  reconstruction at Morriston Hospital in Swansea, Wales. I wrote my first creative bite just as we were starting and we are now one year on and six months left to run. See the invite to the symposium and exhibition and more information at: www.reconstructingourselves.com

One of the things I have been reflecting on is the continuum between pure Art and pure Research  and how you decide when a project needs ethical clearance. 

When we applied for ethical clearance for Reconstructing Ourselves we just applied for the Research strand and not for the Arts project or the patient storytelling strand. I did not want to create a precedent and I wanted Art and patient stories to be seen as normal practice and therefore not  needing to be submitted to the ethical board. As it happened they didn’t grant permission the first time, as they didn’t understand the project and why the Arts Council had funded it – so we did have to resubmit and go to them and explain all the three strands and how they were working together.

It has been useful to reflect on when ethical clearance is needed.

I am proposing a simple decision making structure based on three questions:

1. Does the Art project involve participants?

2. Does the project involve a Research question?

3. Does the project involve anything where people might feel they are part of an experiment or where they might feel exploited in anyway?

If the answer to question 1 is yes then you should do a risk assessment and have a robust consent process

If the answer to question 1 and 2 is yes then you should get ethical clearance. Just make sure that  you are not confusing having a research question with doing evaluation of the project. Evaluation  does not need ethical clearance but a research question does, people often say they are doing research when they are simply getting feedback on a project – it is important to be clear about the difference.

If the answer to the third questions is yes then you definitely need ethical clearance. 

This is very simplistic and there are lots of other issues – not least that in the nature of an artistic process the artist does not know where it will lead to or what participants might be involved in making – at this stage in Reconstructing Ourselves we are having to ask if some of the Art requires more than just a robust consent process? Are we taking care of our participants in the best way? What are the risks?

I hope this is the beginning of a useful conversation. I would be very pleased to hear anyone’s thoughts on this if they would like to join the conversation email me at prue.thimbleby@wales.nhs.uk