Family communication of genetic of risk information: a knitted genetic landscape
Raising awareness of inherited genetic conditions and the challenges that families face in communicating genetic risk information to their children through the creation of knitted genetic landscapes.
Research with families affected or at risk from inherited genetic conditions found that whilst parents where keen to talk to their children about the genetic condition in their family and its risk, they often lacked the words, confidence and knowledge to do so. This led them to delay the disclosure of genetic information, which in some instances caused family tensions.
This project created knitted genetic landscapes through 'yarn-bombing' to raise awareness of inherited genetic conditions (IGC) and the challenges that families’ face in communicating genetic risk information (GRI) to their children.
The knitted genetic landscape produced a neutral space in which experiences of coping with IGCs were heard, promoting academic debate and a creative and dynamic public dialogue.
'Yarn-bombing' is a cultural artistic practice in which urban knitters or yarn bombers use colourful knitted displays and handmade amigutmi (knitted figures) to tell a story or heighten awareness of a political or cultural issue or event; in this case inherited genetic conditions.
In some families children and young people knew about the genetic condition affecting their family and wanted to talk to their parents about it. However, many children didn’t know how to start conversations and / or were frightened to ask questions in case they upset their parents. The project team therefore set out to create a fun and engaging activity for families affected by or at risk from inherited genetic conditions that would help to initiate conversations about genetic risk, but also intrigue and engage the wider public in genetics.
The first installtion displaying the knitted genetic landscape expanded to include a finger-knitting workshop, where participants made models of chromosomes; science engagement stands, led by the Biomedical Research Centre (BRC); a genetic photographic gallery and genetic counsellors and charities providing information, advice and support to families and the public.
Following the installation event on 24 October 2015, the knitted genetic landscape was re-installed at a genetics department in London with an accompanying poster explaining more about the project.
Dr Emma Rowland
Emma Rowland is a Health Geographer working in the Florence Nightingale Faculty of Nursing and Midwifery at King’s College London. Her PhD research focused on the emotional geographies of care work in the NHS, specifically exploring how spatial and temporal dimensions of care affect the emotional well-being of health professionals and patients delivering and receiving care. Current research focuses on the development of psycho-educational interventions to support families affected or at risk from inherited genetic conditions to talk to their children about genetic risk. It is hoped that these interventions will enhance family function and the emotional well-being of all family members.
Clare Sams, artist and educator
Clare Sams’ arts practice is centred on textiles, using knit and crochet to document modern life. The topics are often focused on the fringes of society, and looks at themes of home and belonging, love and loss, consumerism and waste. The uncomfortable subject matter is softened by the use of the familiar comfort of soft yarn, creating a warmth and familiarity for the audience.Clare uses her art as a way to engage with communities, practicing in galleries, museums, arts events, colleges and schools.
‘Family communication of genetic of risk information: A knitted genetic landscape’ is a collaboration between with the Florence Nightingale Faculty of Nursing and Midwifery at King's College London and artist Clare Sams. The project was brokered by the Cultural Institute.