Robert Klitzman - Böcker

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.

For many doctors, their role as powerful healer precludes thoughts of ever getting sick themselves. When they do, it initiates a profound shift of awareness - not only in their sense of their selves, which is invariably bound up with the 'invincible doctor' role, but in the way that they view their patients and the doctor-patient relationship. While some books have been written from first-person perspectives on doctors who get sick, never has there been a systematic, integrated look at what the experience is like for doctors who get sick, and what it can teach us about our current health care system and more broadly, the experience of becoming ill.The psychiatrist Robert Klitzman here weaves together gripping first-person accounts of the experience of doctors who fall ill and see the other side of the coin, as a patient. The accounts reveal how dramatic this transformation can be - a spiritual journey for some, a radical change of identity for others, and for some a new way of looking at the risks and benefits of treatment options. For most however it forever changes the way they treat their own patients. These questions are important not just on a human interest level, but for what they teach us about medicine today. While medical technology advances, the health care system itself has become more complex and frustrating, and physician-patient trust is at an all-time low. The experiences offered here are unique resource that point the way to a more humane future.

Research on human beings saves countless lives, but has at times harmed the participants. To what degree then should government regulate science, and how? The horrors of Nazi concentration camp experiments and the egregious Tuskegee syphilis study led the US government, in 1974, to establish Research Ethics Committees, known as Institutional Review Boards (IRBs) to oversee research on humans. The US now has over 4,000 IRBs, which examine yearly tens of billions of dollars of research -- all studies on people involving diseases, from cancer to autism, and behavior. Yet ethical violations persist. At the same time, critics have increasingly attacked these committees for delaying or blocking important studies. Partly, science is changing, and the current system has not kept up. Since the regulations were first conceived 40 years ago, research has burgeoned 30-fold. Studies often now include not a single university, but multiple institutions, and 40 separate IRBs thus need to approve a single project. One committee might approve a study quickly, while others require major changes, altering the scientific design, and making the comparison of data between sites difficult. Crucial dilemmas thus emerge of whether the current system should be changed, and if so, how. Yet we must first understand the status quo to know how to improve it. Unfortunately, these committees operate behind closed doors, and have received relatively little in-depth investigation. Robert Klitzman thus interviewed 45 IRB leaders and members about how they make decisions. What he heard consistently surprised him. This book reveals what Klitzman learned, providing rare glimpses into the conflicts and complexities these individuals face, defining science, assessing possible future risks and benefits of studies, and deciding how much to trust researchers -- illuminating, more broadly, how we view and interpret ethics in our lives today, and perceive and use power.These committees reflect many of the most vital tensions of our time - concerning science and human values, individual freedom, government control, and industry greed. Ultimately, as patients, scientists, or subjects, the decisions of these men and women affect us all.

Kuru, like Mad Cow disease, is caused by a rare, infectious crystal protein that invades and colonizes human cells, destroying the nervous system of its victims. There is no known cure. It flourished in one of the remotest places on earth, Papua New Guinea, among the Fore, a people living in the Stone Age, who until recently practiced ritual cannibalism, consuming the brains of their forebears during funerary feasts. Robert Klitzman helped establish the links between these rituals and kuru. What he discovered has provided keys to understanding the mysterious Mad Cow Disease, which may become the world's next major epidemic. Robert Klitzman was 21 years old when he was invited by the Nobel Prize-winning scientist Dr. Carleton Gajdusek, then at the National Institutes of Health, to conduct original research on kuru. Seizing the chance to travel to the other end of the world, Klitzman embarked on an adventure that would change his life.

In the era of the Internet and Oprah, in which formerly taboo information is readily available or freely confided, secrecy and privacy have in many ways given way to an onslaught of confession. Yet for those who are HIV positive, decisions about disclosure of their diagnosis force them to confront intimate, fundamental, and rarely discussed questions about truth, lies, sex, and trust. Drawing from interviews with over seventy gay men and women, intravenous drug users, sex workers, bisexual men, and heterosexual men and women, the authors provide a detailed portrait of moral, social, and psychological decision making. The interviews convey the complex emotions of love, lust, longing, hope, despair, and fear that shape individual dilemmas about whether to disclose to, deceive, or trust others concerning this disease. Some of those interviewed revealed their diagnosis widely; others told no one. Some struggled and ultimately told their partners; others spoke in codes or half-truths. One woman discovered her husband's diagnosis in a diary; when confronted, he denied it.Each year in the United States, 40,000 new cases of HIV arise, yet approximately one-third of the 900,000 Americans who are infected do not know it. As treatments have improved, unsafe sexual behavior has increased and efforts at prevention have stalled. Many of those infected continue to fear and experience rejection and discrimination. Addressing broad debates about the nature of secrecy, morality, and silence, this book explores public policy questions in the light of the nuanced, private decisions that are shaping the course of an epidemic and have broader indications for all.

In the era of the Internet and Oprah, in which formerly taboo information is readily available or freely confided, secrecy and privacy have in many ways given way to an onslaught of confession. Yet for those who are HIV positive, decisions about disclosure of their diagnosis force them to confront intimate, fundamental, and rarely discussed questions about truth, lies, sex, and trust. Drawing from interviews with over seventy gay men and women, intravenous drug users, sex workers, bisexual men, and heterosexual men and women, the authors provide a detailed portrait of moral, social, and psychological decision making. The interviews convey the complex emotions of love, lust, longing, hope, despair, and fear that shape individual dilemmas about whether to disclose to, deceive, or trust others concerning this disease. Some of those interviewed revealed their diagnosis widely; others told no one. Some struggled and ultimately told their partners; others spoke in codes or half-truths. One woman discovered her husband's diagnosis in a diary; when confronted, he denied it.Each year in the United States, 40,000 new cases of HIV arise, yet approximately one-third of the 900,000 Americans who are infected do not know it. As treatments have improved, unsafe sexual behavior has increased and efforts at prevention have stalled. Many of those infected continue to fear and experience rejection and discrimination. Addressing broad debates about the nature of secrecy, morality, and silence, this book explores public policy questions in the light of the nuanced, private decisions that are shaping the course of an epidemic and have broader indications for all.