Am I My Genes?

Genetic testing is rapidly spreading; every year dozens of new tests are developed which analyze our genetically inherited predisposition toward certain diseases. Companies have sprung up which will provide inexpensive online testing of your genetic profile via a simple cheek swab. This testing is also moving from analyzing a small portion of DNA to a person's entire genome. On the plus side, genetics is rapidly enhancing our understanding and treatment of disease, such as Huntington's, cystic fibrosis, sickle cell anemia, breast cancer, and Alzheimer's. Testing of infants and pregnant mothers can detect disorders early, and the manipulation of genes in stem cells is helping to provide new treatments. Drugs are developed that are personalized for a specific individual's genetic profile. Genetics will likely be for the 21st century medicine what antibiotics was for the 20th. For all the inevitable progress however, this knowledge presents ever new dilemmas for patients. Countless people wrestle with fear and apprehension about whether to get tested, and if so, what they should do with the information. In this volume, the psychiatrist Robert Klitzman explores how individuals confront these complex issues in their daily lives. He has interviewed a wide range of people who are at risk for various genetic diseases, and the volume collects and reflects on their experiences grappling with quandaries like: whether to get tested; to whom to disclose their genetic risks (spouses, parents, employers); what treatments to pursue; whether to have children knowing that genetic diseases may be inherited; and whether or not our destiny is ultimately what is in our genes. These are difficult, complicated ethical and sometimes metaphysical questions that are also embedded in intricate social contexts -- the family, the clinic, and the world at large. Klitzman's gripping presentation of the human face of these new technologies is important, useful, and ultimately compelling, since these patients are pioneers in whose path most of us will eventually follow. "Genetics is increasingly important in science and society - from solving crime, to extending our lives. Klitzman's book is an extraordinary exploration of this world, probing the many roles and implications of genetics in our lives today. With great intelligence and humanity, he recounts fascinating stories of how a wide range of women and men and their families face diseases from breast cancer to brain disorders, and confront issues that are among the most fundamental of our time. Filled with astonishing insights, this riveting book is vital reading for us all." - Paula Zahn "Am I My Genes? focuses on some of the most critical ethical and medical issues of our time. Psychiatrist Robert Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing---the possibilities, which are enormous; the anxieties and misunderstandings; the social, legal, and financial issues----and gives the reader insight into what we know and what we don't know. Am I My Genes is an important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." - Kay Redfield Jamison, Ph.D., Professor of Psychiatry, Johns Hopkins School of Medicine and author of An Unquiet Mind "With his graceful prose and vivid examples, Robert Klitzman follows several dozen genetic 'pioneers'-people at risk of breast cancer, Huntington's and alpha-1-antitrypsin deficiency-through their struggles to understand what genetics means for them and their families. Am I My Genes? is an illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk. Read the story of the woman who felt it necessary to steal pages from her medical record, and you will never look upon abstract debates over genetic discrimination the same way." - Thomas H. Murray, Ph.D. President and CEO, The Hastings Center "In a book that is at once scholarly, comprehensive, and accessible, Dr. Klitzman brings his wisdom to the major issues that confront sufferers from disorders with a strong genetic underpinning. Klitzman and the men and women he interviews address the predicaments and moral dilemmas facing patients and families in an age of personalized medicine: whether to test, whom to tell, and how to integrate awareness of disease into the sense of self." - Peter D. Kramer, author of Against Depression and Listening to Prozac "Blending compassion and good science, Robert Klitzman proposes new guidelines for the morally complex questions of how we understand our genetics, and what we choose to do with the destiny they imply. His sensitive, humanist approach converts information into knowledge." - Andrew Solomon, author of Noonday Demon