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Claire Harris
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joselinlinder.com

THE FAMILY GENE

Joselin Linder

A Mission to Turn My Deadly Inheritance into a Hopeful Future

A riveting medical mystery about a young woman’s quest to uncover the truth about her likely fatal genetic disorder that opens a window onto the exploding field of genomic medicine.
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.

Joselin Linder is an accomplished writer. She has contributed to NPR programs This American Life and Morning Edition and has also given a TEDX talk on this topic. She blogs about her genetic disease, the family gene at the center of it, and the fascinating, frustrating and sometimes hilarious journey she has been on to scientifically name it at joselinlinder.com.
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Book

Published 2017-03-14 by Ecco

Book

Published 2017-03-14 by Ecco

Comments

Linder’s writing is magnetic. She weaves this deeply personal story with fascinating scientific discoveries—somehow leaving us hopeful, heartbroken, and inspired all in the same breath.

Three of the most powerful forces in life are family, love and science. Joselin Linder, through a combination of the fates, found herself in a position to tell a first-person tale of how those forces can intersect.

The Family Gene is both a riveting medical mystery and a heart-wrenching family memoir. With compassion and humor, Joselin Linder keeps us turning the pages until we fully share her stunning insight: that genetics is equal parts science and love.

A riveting story of a family, a disease, genetics, and the eternal path of living and dying we all walk. Intimate and instructive, immeasurably wise, Linder’s big-hearted and intelligent story of her tenacious search for answers to her family’s singular disease will leave you breathless.

Linder (New York Post and Morning Edition) delivers a moving and deft account of her journey to unearth a diagnosis of the mysterious family gene that caused her father’s and six other relatives’ untimely deaths. In this fascinating journey, she seamlessly moves from instructing on complicated genomic science to revealing the relatable follies of her 20s, never shedding wit or humor. She eloquently tells the story of her father’s protracted battle with a mystery illness that led to his painful and courageous search for medical answers. Once Linder starts to develop similar symptoms she continues his quest. She consults medical experts and genomic specialists who revel in the wonders, intricacies, and unsolved mysteries of genetic science. She is able to write deftly about medicine with the same casualness and verve she devotes to stories of aimless romance and the ennui of her mid-20s. With compassion and a keen eye, she digs into her family history, medical history, and contemporary genetic science. Lessons on DNA and the significance of X chromosomes in passing genes are woven into Linder’s intimate look at her ongoing struggle to stay alive. She expertly balances the serious and often tragic with an indefatigable charm and warmth. This book is a wonderful blend of reflections on coming of age, medicine, and what it means to live against all odds.

The science is enthralling, the narrative’s race-against-the-clock tension is nail-biting, but at its core, this book is about the remarkable bond of family—and curse and gift of inheritance.

This unique book is at once a compelling mystery, a moving personal story, and a fascinating exploration of cutting-edge science. Scary and hopeful, perceptive and empathetic, it will give you new perspective on your own life choices and those of the people you love.