My niece was 36, newly married, and "on top of the world," when she collapsed and died. Her autopsy report caused us to panic-there was something in our blood that could trigger sudden death. As a mother, I prayed for the curse to spare my children. As a geneticist, I plotted to find the killer. Without planning to do so, I became a medical detective. The book tells of the sorrows a mutation caused my family for generations, revealing a history of resilience and hope. As the stories unfold, I weave in discussions about genetic testing, screening, and gene therapy. The aim is to raise awareness of the crucial role of genetic testing in safeguarding personal health and patient care. I believe I became a geneticist at a time when few women pursued this path because I was destined to help understand the family illness and advocate for genetic testing. Experts agree on the value of genetic testing when there is a family history of disease, or if the patient has an illness frequently caused by a mutation. Knowing the disease mutation lets other family members find out if they have it too and need preventive care. The book explains that doctors can order tests with genetic counseling at relatively low cost and how this will help them prescribe preventive actions, make earlier diagnoses, and get better outcomes. The book's genetic discussions also delve into the implications of broad-based genetic screening without a family history. Policymakers are currently considering the benefits and drawbacks of this approach and I present both sides of this debate. While working on this book I uncovered a family secret hidden for over one hundred years. Family lore had it that a heavy dressmaker's mirror fell on and killed my uncle when he was four. But the death certificate told a different story. The true cause of my uncle's death was heart failure. My grandparents fabricated the dressmaker's mirror accident to protect their surviving children's marriage prospects. Long before the discovery of DNA, my grandparents intuited and feared James Watson's message, "We used to think that our fatewas in our stars, but now we know that, in large measure, our fateis in ourgenes." The book suggests genetic testing and associated medical intervention can yet change our fates.
Susan Weiss Liebman, PhD, was among MIT's first undergraduate female students. Upon completion of graduate and post-doctoral work she became a biology professor at the University of Illinois at Chicago. There she taught undergraduate and graduate genetics for thirty-four years while leading a well-funded research group in molecular genetics and raising two children with her husband. When her niece died suddenly at age thirty-six, Liebman became a medical detective. As a result, she is now a strong advocate for genetic testing.
