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Am I My Genes? Confronting Fate and Family Secrets in the Age of Genetic Testing

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 antiobiotics 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 quandries 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.