Lived experience perspectives on reproductive genetic screening
Front Line Genomics interviewed Felicity Boardman, Professor of Social Science in Genomics at Warwick University in the UK, who aims to bring lived experience perspectives to reproductive genetic technology.
Professor Boardman, who has a genetic condition herself, leads the Imagining Futures research project, which explores the social and ethical implications associated with the expansion of genetic screening. While this research initially focussed on the genetic condition spinal muscular atrophy, it has extended to several other conditions including cystic fibrosis, fragile X, haemophilia, and thalassemia. She states that her lived experience has provided valuable insight when interviewing families affected by genetic conditions and allowed her to reflect on how their experience may differ from her own.
She also highlights that although genetic screening is opening up to the general UK population (i.e. those who do not have a history of genetic conditions), it is also essential to look at what these conditions mean for those living with them. Her research has found that just because someone has a ‘clinically severe’ condition, this does not necessarily mean their lived experience has been negative.
See here for the full interview.