The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future

When Joselin Linder was in her twenties her legs suddenly started to swell. After years of misdiagnoses, doctors discovered a deadly blockage in her liver. Struggling to find  an explanation for her unusual condition, Joselin compared the medical chart of her father—who had died from a mysterious disease, ten years prior—with that of an uncle who had died under similarly strange circumstances. Delving further into the past, she discovered that her great-grandmother had displayed symptoms similar to hers before her death. Clearly, this was more than a fluke.

Setting out to build a more complete picture of the illness that haunted her family, Joselin approached Dr. Christine Seidman, the head of a group of world-class genetic researchers at Harvard Medical School, for help. Dr. Seidman had been working on her family’s case for twenty years and had finally confirmed that fourteen of Joselin’s relatives carried something called a private mutation—meaning that they were the first known people to experience the baffling symptoms of a brand new genetic mutation. Here, Joselin tells the story of their gene: the lives it claimed and the future of genomic medicine with the potential to save those that remain. 

Digging into family records and medical history, conducting interviews with relatives and friends, and reflecting on her own experiences with the Harvard doctor, Joselin pieces together the lineage of this deadly gene to write a gripping and unforgettable exploration of family, history, and love. A compelling chronicle of survival and perseverance, The Family Gene is an important story of a young woman reckoning with her father’s death, her own mortality, and her ethical obligations to herself and those closest to her.

How do you fight an enemy that’s written into your own DNA?

• A Multi-Generational Medical Mystery: Follow Joselin as she uncovers a deadly pattern connecting her own strange symptoms to the untimely deaths of her father, uncle, and great-grandmother.
• The Hunt for a Private Mutation: Join a team of world-class Harvard geneticists as they race to identify a brand-new genetic disorder—a mutation so rare it had never been seen before.
• A Gripping Science Memoir: For fans of The Immortal Life of Henrietta Lacks, this book blends a deeply personal story of family and grief with a fascinating look at the frontiers of genomic medicine.
• The Future of Medical Genetics: A powerful and ultimately hopeful look at how understanding our DNA gives us the power to change our fate, and how one family has an opportunity to weed a deadly gene out of existence.