Two recently published books, “The Family Gene” and “The Inheritance“, explore a similar theme – what does one do in the face of a deadly inherited genetic condition that is afflicting multiple members of one’s family? The families at the center of these two stories – one affected by a fatal liver condition that still doesn’t have a name, the other by early-onset Alzheimer’s disease – face a series of personal, family, emotional and ethical issues through their harrowing journeys. But both families have also been actively involved in research efforts to figure out the genetic causes and, hopefully one day, cures for their conditions, even if they themselves may not live to directly benefit from the research.
The Chicago Tribune discusses these two books in: ‘For us, this means hope’: Exploring the promise of genomic medicine