Disability, and more specifically disability prevention, is at the very heart of genomic medicine, driving the ever-widening capabilities of genomic technologies. However, very little is known about the views of people living with genetic disabilities towards these developments, as well as the consequences they anticipate both for themselves, and wider society.
This talk draws on extensive empirical (qualitative and quantitative) data from people living with five of the most common genetic disorders facing the UK population, as well as their families, asking the question: what does it mean to be a genetically disabled person in an age of genomic medicine? It is only through unravelling of some of this group’s complex responses to genomic medicine that a productive, and mutually beneficial, dialogue be established around genomics and disability, that has, until now, been largely overlooked.
Dr. Felicity Boardman is an assistant professor in medicine ethics and society from Warwick Medical School. Her research career has focused on the social and ethical implications of genetic technologies, and in particular, their relationship to disabled people and their families. She is currently in receipt of a Wellcome Trust Investigator Award exploring attitudes towards pre-conception carrier screening.
A sketchnote of the seminar was created by illustrator Laura Olivares of Wellcome Genome Campus Public Engagement, which is available to download (below) or view (in the catalog entry photos)
Film made by Lauren Robarts. Boardman F (2019) Unravelling Disability's DNA: Experience and Identity in a Genomic Age. Invited speaker as a part of the Society and Ethics Research Seminar Series. 14 January. Wellcome Genome Campus, Cambridge, UK