In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get tested, and if so, what to do with the results. Am I My Genes? shows how real individuals have confronted these issues in their daily lives. Robert L. Klitzman interviewed 64 people who faced Huntington's Disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. The book describes--often in the person's own words--how each has wrestled with the vast implications that genetics has for their lives and their families. Klitzman shows how these men and women struggle to make sense of their predicament and its causes. They confront a series of quandaries--whether to be tested; whether to disclose their genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and understand themselves and their genetics; what treatments, if any, to pursue; whether to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. In the face of these uncertainties, they have tried to understand these tests and probabilities, avoid fatalism, anxiety, despair, and discrimination, and find hope, meaning, and a sense of wholeness. Forced to wander through a wilderness of shifting sands, they chart paths that many others may eventually follow. Klitzman captures here the voices of pioneers, some of the first to encounter the personal dilemmas introduced by modern genetics. Am I My Genes? is an invaluable account of their experience, one that will become all the more common in the coming years. "An extraordinary exploration...probing the many roles and implications of genetics in our lives today.... Filled with astonishing insights, this riveting book is vital reading for us all." --Paula Zahn "Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... An important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." --Kay Redfield Jamison, author of An Unquiet Mind "An illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk." --Thomas H. Murray, President and CEO, The Hastings Center
Psychiatrist and bioethicist Robert Klitzman here explores the need for spiritual guidance among patients and their families who are experiencing illness. They often struggle to make sense of their situation, and as they confront their mortality they will try to seek hope, purpose, and larger connections beyond the world of medicine. While physicians are frequently uncomfortable with these issues, often under sung hospital chaplains can and do fill this void. Klitzman uses interviews with patients, families, and chaplains to bring their stories to life; and more broadly he explores the ways in which hospitals and the health care system might address this neglect of a vital human need in times of crisis.
Since the first "test tube baby" was born over 40 years ago, In Vitro Fertilization and other Assisted Reproductive Technologies (ARTs) have advanced in extraordinary ways, producing millions of babies. An estimated 20% of American couples use infertility services to help them conceive, and that number is growing. Such technologies permit thousands of people, including gay and lesbian couples and single parents, to have offspring. Couples can now transmit or avoid passing on certain genes to their children, including those for chronic disease and, probably sometime soon, height and eye color as well. Prospective parents routinely choose even the sex of their future child and whether or not to have twins. The possibilities of this rapidly developing technology are astounding-especially in the United States, where the procedures are practically unregulated and a large commercial market for buying and selling human eggs is swiftly growing. New gene-editing technology, known as CRISPR, allows for even more direct manipulation of embryos' genes. As these possibilities are increasingly realized, potential parents, doctors, and policy-makers face complex and critical questions about the use-or possible misuse-of ARTs. Designing Babies confronts these questions, examining the ethical, social, and policy concerns surrounding reproductive technology. Based on in-depth interviews with providers and patients, Robert Klitzman explores how individuals and couples are facing quandaries of whether, when, and how to use ARTs. He articulates the full range of these crucial issues, from the economic pressures patients face to the moral and social challenges they encounter as they make decisions which will profoundly shape the life of their offspring. In doing so, he reveals the broader social and biological implications of controlling genetics, ultimately arguing for closer regulation of procedures which affect the lives of generations to come and the future of our species as a whole.
In the fifty years since DNA was discovered, we have seen extraordinary advances. For example, genetic testing has rapidly improved the diagnosis and treatment of diseases such as Huntington's, cystic fibrosis, breast cancer, and Alzheimer's. But with this new knowledge comes difficult decisions for countless people, who wrestle with fear about whether to get tested, and if so, what to do with the results. Am I My Genes? shows how real individuals have confronted these issues in their daily lives. Robert L. Klitzman interviewed 64 people who faced Huntington's Disease, breast and ovarian cancer, or Alpha-1 antitrypsin deficiency. The book describes--often in the person's own words--how each has wrestled with the vast implications that genetics has for their lives and their families. Klitzman shows how these men and women struggle to make sense of their predicament and its causes. They confront a series of quandaries--whether to be tested; whether to disclose their genetic risks to parents, siblings, spouses, offspring, friends, doctors, insurers, employers, and schools; how to view and understand themselves and their genetics; what treatments, if any, to pursue; whether to have children, adopt, screen embryos, or abort; and whether to participate in genetic communities. In the face of these uncertainties, they have tried to understand these tests and probabilities, avoid fatalism, anxiety, despair, and discrimination, and find hope, meaning, and a sense of wholeness. Forced to wander through a wilderness of shifting sands, they chart paths that many others may eventually follow. Klitzman captures here the voices of pioneers, some of the first to encounter the personal dilemmas introduced by modern genetics. Am I My Genes? is an invaluable account of their experience, one that will become all the more common in the coming years. "An extraordinary exploration...probing the many roles and implications of genetics in our lives today.... Filled with astonishing insights, this riveting book is vital reading for us all." --Paula Zahn "Klitzman lucidly discusses the moral and psychological complexities that come in the wake of genetic testing.... An important book for anyone who has the genes for pathology, which is all of us, and I recommend it highly." --Kay Redfield Jamison, author of An Unquiet Mind "An illuminating voyage through the medical, familial and existential quandaries faced by those of us at genetic risk." --Thomas H. Murray, President and CEO, The Hastings Center
Psychiatrist and bioethicist Robert Klitzman here explores the need for spiritual guidance among patients and their families who are experiencing illness. They often struggle to make sense of their situation, and as they confront their mortality they will try to seek hope, purpose, and larger connections beyond the world of medicine. While physicians are frequently uncomfortable with these issues, often under sung hospital chaplains can and do fill this void. Klitzman uses interviews with patients, families, and chaplains to bring their stories to life; and more broadly he explores the ways in which hospitals and the health care system might address this neglect of a vital human need in times of crisis.
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