Valuing Lived Experience in a Genomic Age: Why the Personal is Still Political

This event took place on Wednesday 13 January 2021

At a time when genomic medicine is becoming increasingly integrated into healthcare, the possibility of using whole genome sequencing (WGS) technologies to enhance, or extend, population screening programmes is now being considered on a global scale. With their capacity to detect large numbers of variants simultaneously, important questions are currently being asked about which genetic conditions are the appropriate targets of screening programmes using WGS, especially screening programmes that have implications for reproductive decision-making.

The question of who has the appropriate expertise and authority to decide which genetic conditions should be screened for, and how, remains an open question, and one which I will consider within this talk, using research data from families living with a range of genetic conditions as a point of departure.

This talk will trace the emergence of my research interests and career, both a researcher, but also as a person with a genetic condition myself, demonstrating the evolution of my ideas about the nature and status of personal experience as a site of expertise. Through a presentation of my unfolding research programmes, I will consider how personal accounts of life with genetic conditions may be used to interrogate some of the fundamental questions facing genomic medicine today, particularly regarding its future applications and directions.