Jill Dopf Viles
Description
Who lives? Who dies? Who decides? One woman's quest to save her family from a rare hereditary disorder and what it means for our collective genetic fu
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Jill Dopf Viles's genetic detective story takes readers on an extraordinary journey of scientific discovery, personal determination, and bioethical debate. From childhood, Jill knew her body was different - her muscles were weak, her tendons tight, and her body fat nearly absent. When doctors failed to diagnose her condition, she became her own researcher, diving deep into genetics in her search for answers.
Nearly thirty years ago, Jill Viles navigated an underground blood draw and genetic study with a team of Italian scientists to solve the medical mystery that plagued her family for generations. Her relentless pursuit of answers led to astonishing discoveries, including an unexpected genetic link to Olympic hurdler, Priscilla Lopes Schliep. While Jill battles a rare form of muscular dystrophy, Priscilla's mutation, in the same gene, enhances her athleticism. Their connection, highlighted on This American Life, is just one of the many remarkable stories in this book.
As the cost of "once and done" gene therapy skyrockets--reaching an astounding $4.25 million per treatment - Jill realizes the urgency of her pursuit. She doesn't have time to wait for pharmaceutical companies to take an interest in her ultra-rare condition. Instead, she uses her own biochemical acumen to manufacture a personalized gene therapy for just $1,050.
Viles explores urgent questions such as: Who deserves access to life-giving treatments? What role should profit play in healthcare? Who is ultimately responsible for payment-private health insurers, the government, or the patient? As Jill stores her self-designed viral vector in her rural Iowa kitchen, beside her ground beef and frozen waffles, she faces the most looming question of all: should she risk her own health to save her beloved family members who share the same genetic diagnosis by testing out the genetic therapy on herself?
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