December 2016

If November was about meeting the participants and introducing them to concepts around film-making, December saw participants fleshing out ideas and concepts, and in some cases putting them into practice.

Briony gave every participant an exercise tailored to their specific interests: taking photos or video of meaningful objects and moments in a day, recording thoughts at night just before bed, or recording a conversation with family members looking at old photographs. The results of these exercises were shown to the group, prompting feedback and discussion. This, in turn, prompted some participants to develop the ideas explored through the exercises. Other participants had a set goal in mind – they may have been planning a film on their own anyway, or Life: Moving provided an excuse to start.

Alongside this progress, December also brought its share of challenges: one participant who was particularly excited about the project has been hospitalised, and another died. Our thoughts are with these people and their loved ones.

A development that has emerged this month is the tension and even conflict between Universities’ ethical review structures and  Arts-based research projects such as ours. Gaining ethical approval for Life: Moving (or, rather, the Digital Technologies and Human Vulnerabilities project) was a long and rigorous process which Michele undertook in 2015 and 2016. NHS approval could not be given owing to the disciplinary and methodological particularities of this project, that is, that it is  s based on neither clinical nor Social Care activities. It took a year to find that out. Therefore, the University’s Ethical Review committee had to provide the approval instead. The approval that was granted did not originally include participants’ filming “post-capacity” in accordance with the 2005 Mental Capacity Act. Having sought additional advice, Michele now knows that there is provision within the act for this filming to take place in accordance with participants’ advanced wishes and consent. This issue, however, did prove disturbing for participants who are adamant that their wishes, and those of their loved ones who have right-of-attorney,  be respected. It was also, of course, disturbing to the team in potentially interrupting the research and compromising its integrity: it is after all a project aimed at improving ethical practices through dogged scrutiny of the ethical issues involved in all staged of its activities.

Adrian Banting and Michele Aaron

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