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.
