As part of The Wellcome Trust funded Ethical Preparedness in Genomic Medicine project, Professor Bobbie Farsides, Professor of Clinical and Biomedical Ethics at BSMS, and Dr Rich Gorman, Research Fellow in Bioethics at BSMS, have been working with families affected by rare genetic conditions to explore different ways of capturing and sharing important stories and messages about their lives.
Bobbie and Rich’s work is set against the context of the mainstreaming of genomic medicine. With whole genome sequencing set to play an ever-increasing role within public healthcare, understanding how patients and their families see the impact (or indeed lack thereof) of these new healthcare technologies is of critical importance. Bobbie and Rich’s ambition is to use arts and humanities approaches as a way to inform ethical thinking about this emerging area of medical practice.
Working with local artist Tony Gammidge, Bobbie and Rich designed a series of workshops to take participants through the process of producing their own stop-motion animation films. Stop-motion is an animated filmmaking technique which involves incrementally manipulating and moving objects –puppets, figurines, or clay figures – between individually photographed frames, which when stitched together produce the semblance of motion.
The mediums through which stories are told are important in affecting which stories emerge, and it soon became apparent that animation allows participants to tell stories in unique ways. Bobbie and Rich’s participants quickly embraced the potential stop-motion animation offered to tell stories, creating films about the challenges of accessing prescriptions, the importance of sensitive language in consultations, and the invisible stresses parents of children with rare genetic conditions have to cope with. Participants reflected that their stories emerged through the practice of doing and making. The filmmaking workshops sparked conversations, recollections, and stories of both similarity and solidarity amongst group members. The process of smoothing and sculpting plasticine in turn smoothing the way for conversations about difficult and sensitive topics. Animating gave participants an opportunity to reflect on their concerns, the challenges they face, and the moments and encounters in their lives that mattered.
Paying attention to narratives can help healthcare professionals to understand additional dimensions of their patients’ lives, creating an affective link and challenging assumptions. Stories have lives, stories travel, and stories remain memorable. This is why the EPPiGEN team is confident that the creative outputs produced by project participants will prompt greater understanding of the lived experiences of families affected by rare genetic conditions.
Professor Bobbie Farsides said: “BSMS benefits greatly from our connections with the local artistic and creative communities, and this project allows us to share that privilege more widely. As always, our participants took full advantage of the opportunity, and under Tony’s guidance produced some amazing work which they are proud to share.”
Dr Rich Gorman added: “Animation might seem like an unusual method, but the films our participants produced have been so incredibly powerful, evocative, and revealing, and we are very grateful to everyone who has taken part and shared their stories with us.”
Rich, Bobbie and Tony have published a paper about their research, titled ‘Stop-motion storytelling: Exploring methods for animating the worlds of rare genetic disease’.
Read the paper here >
They have also produced a short, animated film, which is available to view below.