Cesagen Cross-site Seminar: Sara Shostak on Having Epilepsy in the Age of the Genome
SpeakersSara Shostak, Assistant Professor of Sociology, Department of Sociology at Brandeis University
VenueRailway Room, 51 Park Place, Cardiff University broadcast via video link to D023 (MR07) D Floor, Faculty of Arts and Social Sciences
How Science Matters: Having Epilepsy in the Age of the Genome
Substantial investment has been made in identifying genes that raise risk for epilepsy, and genetic testing increasingly is being used in clinical practice. However, almost no empirical data are available from the perspective of people with epilepsy and their family members about the impact of genetic information, including their perceptions of the potential benefits and harms of genetic testing. This presentation draws on two cohorts of in-depth qualitative interviews with people with epilepsy - one from the mid-1970s and one from 2005 - to consider the multiple ways that genetic information may enter into identities and experiences of people living with epilepsy.