The Family Gene: 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 rare 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 her family history, 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 inherited 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 medical genetics 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.

This unforgettable medical memoir chronicles one family’s resilience and the scientific quest to understand the DNA that binds them.

• A Generational Medical Mystery: When Joselin Linder develops a strange, life-threatening illness, she uncovers a pattern of mysterious deaths in her family tree, linking her fate to that of her father, uncle, and even great-grandmother.
• Pioneering Genetic Research: Follow the decades-long hunt with world-class researchers at Harvard Medical School as they work to identify a private mutation affecting a single family and map the deadly gene responsible.
• The Human Side of Science: More than a clinical story, this is a moving account of a daughter reckoning with her father’s death, her own mortality, and the profound questions raised by the burgeoning field of medical genetics.
• An Unforgettable Family History: Based on years of digging through medical records and family archives, this gripping narrative explores the deep bonds of family, the weight of inheritance, and the enduring power of love.

A GRIPPING MEDICAL MYSTERY 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, Linder 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, Linder’s illness was more than a fluke. 

Setting out to build a more complete picture of the sickness that haunted her family, Linder 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 Linder’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 variant. Here, Linder tells the story of their gene: the lives it claimed and the lives that advances in genomic medicine still have the potential to save.  

Digging into family records and medical history, conducting interviews with relatives and friends, and reflecting on her own experiences with Dr. Seidman, Linder 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.

“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.” - Abby Sher, author of Amen, Amen, Amen

“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.” - Rachel Fershleiser, editor of Not Quite What I Was Planning

“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.” - Jennifer Gilmore, author of Golden Country

“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.” - Andrew Blum, author of Tubes

“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.” - Susannah Cahalan, author of Brain on Fire

“Linder not only knows how to tell a compelling story but also how to use numbers to good effect and how to spell out complicated concepts… Her brutal honesty contributes to the power of this thoroughly researched chronicle of the quest to conquer chromosomal abnormalities.” - Booklist, Starred Review

“Crisply written, deeply informed. . . . Linder captures the dread and fatigue that accompanies such an odyssey. The Family Gene nails this truth in a clear, honest voice, an invaluable addition to the literature that dramatizes severe illness and its impact.” - Minneapolis Star Tribune

“Surprisingly buoyant . . . Describing how it feels to face the likelihood of a shortened life-including her conflicted desire to be a mother, despite the risks for any child-Linder reminds us that hope ‘isn’t the same thing as truth.’” - New Yorker

“The Family Gene [is] both congenial and engaging, despite the long shadow of a broken gene.” - New York Times Book Review

“[Linder] views her future with measured optimism…Genealogists and readers interested in popular medicine may find this book more relatable than Alice Wexler’s Mapping Fate.” - Library Journal

“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.” - Bob Greene, author of Once Upon a Town: The Miracle of the North Platte Canteen

“Linder’s memoir is a personal tale of loss, illness, ethical dilemmas and emotional fallout. Some of the details are harrowing. But Linder tells her story in a smart, wry voice devoid of self-pity.” - Chicago Tribune

“Moving and deft. . . . Linder 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.” - Publishers Weekly (Starred Review)

“Linder’s narrative is a combination of a fascinating medical detective story and an absorbing, powerfully written family chronicle. . . . She successfully integrates cutting-edge genetic research into her personal quest. - Kirkus