The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future
3.5/5
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About this ebook
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
Joselin Linder is a regular contributor to the NEW YORK POST, whose work has also been featured on THIS AMERICAN LIFE, MORNING EDITION and LIFE OF THE LAW. She spoke at the TEDX GOWANUS event in Brooklyn in 2014, presenting for the first time on the subject of her family gene and the deadly illness to which it leads. Exclusive to just fourteen people, the story of the gene will be told in Linder’s new book, THE FAMILY GENE, coming out in 2017. She lives in Brooklyn with her husband and two dogs.
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Reviews for The Family Gene
13 ratings3 reviews
- Rating: 3 out of 5 stars3/5“You should fight to live long and well, you should experience meaningfulness as often as you can, and the rest of the time you should just ignore death completely.” – Joselin Linder, The Family Gene
Non-fiction memoir about a family with a genetic variant. Joselin Linder inherited a unique gene from her father, which causes a currently unnamed disease that has resulted in the deaths of five family members. In this memoir, the author documents her family’s pain and suffering, the genetic research involved in tracing the source, and the medical analysis involved in discovering a treatment. She talks about what it is like living with a potentially fatal condition.
This book covers a good amount of medical science in a manner easily understood by a layperson. It shows how this family turns tragedy into an opportunity to work in partnership with doctors and scientists to understand and reduce the impact of this unique disease. The author intersperses information about the history and recent advances in genetics into her personal story. The writing style is colloquial, with humor sprinkled throughout, as a respite from the weighty topics. Linder only touches the surface of the genetic engineering debate, instead offering her personal insight from a perspective of someone with a significant stake in the outcome.
Recommended to those interested in medically-oriented memoirs, hereditary diseases, and genetic research. I think fans of The Immortal Life of Henrietta Lacks, Brain on Fire, or Lab Girl may also appreciate it. - Rating: 4 out of 5 stars4/5Fascinating book by author who inherited fatal gene causing death in the past 3 generations, including her father. Linder's father's illness (for which there was no diagnosis) caught the attention of a genetic researcher at Harvard. Dr. Seidman subsequently spent 20 years (and still counting) and finally discovered a private mutation that some family members inherit while others do not. Joselin Linder is very frank about the difficult challenges, including whether to have children or not (and pass the gene to another generation). She confronts this with more optimism and zest then I can imagine doing in the same situation.
1 person found this helpful
- Rating: 3 out of 5 stars3/5fascinating theme, a family with a new genetic disease but very poorly written