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The history of contemporary genetic counseling, including its medical, personal, and ethical dimensions. Winner of the CHOICE Outstanding Academic Title of the Choice ACRL For sixty years genetic counselors have served as the messengers of important information about the risks, realities, and perceptions of genetic conditions. More than 2,500 certified genetic counselors in the United States work in clinics, community and teaching hospitals, public health departments, private biotech companies, and universities. Telling Genes considers the purpose of genetic counseling for twenty-first century families and society and places the field into its historical context. Genetic counselors educate physicians, scientific researchers, and prospective parents about the role of genetics in inherited disease. They are responsible for reliably translating test results and technical data for a diverse clientele, using scientific acumen and human empathy to help people make informed decisions about genomic medicine. Alexandra Minna Stern traces the development of genetic counseling from the eugenics movement of the early twentieth century to the current era of human genomics. Drawing from archival records, patient files, and oral histories, Stern presents the fascinating story of the growth of genetic counseling practices, principles, and professionals.
A historical look at how activists influenced the adoption of more positive, inclusive, and sociopolitical views of disability. Disability activism has fundamentally changed American society for the better—and along with it, the views and practices of many clinical professionals. After 1945, disability self-advocates and family advocates pushed for the inclusion of more positive, inclusive, and sociopolitical perspectives on disability in clinical research, training, and practice. In Disability Dialogues, Andrew J. Hogan highlights the contributions of disabled people—along with their family members and other allies—in changing clinical understandings and approaches to disability. Hogan examines the evolving medical, social, and political engagement of three postwar professions—clinical psychology, pediatrics, and genetic counseling—with disability and disability-related advocacy. Professionals in these fields historically resisted adopting a more inclusive and accepting perspective on people with disabilities primarily due to concerns about professional role, identity, and prestige. In response to the work of disability activists, however, these attitudes gradually began to change. Disability Dialogues provides an important contribution to historical, sociological, and bioethical accounts of disability and clinical professionalization. Moving beyond advocacy alone, Hogan makes the case for why present-day clinical professional fields need to better recruit and support disabled practitioners. Disabled clinicians are uniquely positioned to combine biomedical expertise with their lived experiences of disability and encourage greater tolerance for disabilities among their colleagues, students, and institutions.
Have you ever heard of a person who left you wondering, "How could someone be so twisted? So evil?" Prompted by clues in her sister’s diary after her mysterious death, author Barbara Oakley takes the reader inside the head of the kinds of malevolent people you know, perhaps all too well, but could never understand. Starting with psychology as a frame of reference, Oakley uses cutting-edge images of the working brain to provide startling support for the idea that "evil" people act the way they do mainly as the result of a dysfunction. In fact, some deceitful, manipulative, and even sadistic behavior appears to be programmed genetically—suggesting that some people really are born to be bad. Oakley links the latest findings of molecular research to a wide array of seemingly unrelated historical and current phenomena, from the harems of the Ottomans and the chummy jokes of "Uncle Joe" Stalin, to the remarkable memory of investor Warren Buffet. Throughout, she never loses sight of the personal cost of evil genes as she unravels the mystery surrounding her sister’s enigmatic life—and death. Evil Genes is a tour-de-force of popular science writing that brilliantly melds scientific research with intriguing family history and puts both a human and scientific face to evil.
“[An] important book.… Heine’s vibrant writing makes it come alive with personal significance for every reader.”—Carol Dweck, author of Mindset Scientists expect one billion people to have their genomes sequenced by 2025. Yet cultural psychologist Steven J. Heine argues that, in trying to know who we are and where we come from, we’re likely to completely misinterpret what’s “in our DNA.” Heine’s fresh, surprising conclusions about the promise, and limits, of genetic engineering and DNA testing upend conventional thinking and reveal a simple, profound truth: your genes create life—but they do not control it.
The long-awaited story of the science, the business, the politics, the intrigue behind the scenes of the most ferocious competition in the history of modern science—the race to map the human genome. On May 10, 1998, biologist Craig Venter, director of the Institute for Genomic Research, announced that he was forming a private company that within three years would unravel the complete genetic code of human life—seven years before the projected finish of the U.S. government’s Human Genome Project. Venter hoped that by decoding the genome ahead of schedule, he would speed up the pace of biomedical research and save the lives of thousands of people. He also hoped to become very famous and very rich. Calling his company Celera (from the Latin for “speed”), he assembled a small group of scientists in an empty building in Rockville, Maryland, and set to work. At the same time, the leaders of the government program, under the direction of Francis Collins, head of the National Human Genome Research Institute at the National Institutes of Health, began to mobilize an unexpectedly unified effort to beat Venter to the prize—knowledge that had the potential to revolutionize medicine and society. The stage was set for one of the most thrilling—and important—dramas in the history of science. The Genome War is the definitive account of that drama—the race for the greatest prize biology has had to offer, told by a writer with exclusive access to Venter’s operation from start to finish. It is also the story of how one man’s ambition created a scientific Camelot where, for a moment, it seemed that the competing interests of pure science and commercial profit might be gloriously reconciled—and the national repercussions that resulted when that dream went awry.
A richly detailed history that “uncovers the challenges and limitations of our increasing reliance on genetic data in medical decision making” (Shobita Parthasarathy, author of Building Genetic Medicine). Medical geneticists began mapping the chromosomal infrastructure piece by piece in the 1970s by focusing on what was known about individual genetic disorders. Five decades later, their infrastructure had become an edifice for prevention, allowing expectant parents to test prenatally for hundreds of disease-specific mutations using powerful genetic testing platforms. In this book, Andrew J. Hogan explores how various diseases were “made genetic” after 1960, with the long-term aim of treating and curing them using gene therapy. In the process, he explains, these disorders were located in the human genome and became targets for prenatal prevention, while the ongoing promise of gene therapy remained on the distant horizon. In narrating the history of research that contributed to diagnostic genetic medicine, Hogan describes the expanding scope of prenatal diagnosis and prevention. He draws on case studies of Prader-Willi, fragile X, DiGeorge, and velo-cardio-facial syndromes to illustrate that almost all testing in medical genetics is inseparable from the larger—and increasingly “big data”–oriented—aims of biomedical research. Hogan also reveals how contemporary genetic testing infrastructure reflects an intense collaboration among cytogeneticists, molecular biologists, and doctors specializing in human malformation. Hogan critiques the modern ideology of genetic prevention, which suggests all pregnancies are at risk for genetic disease and should be subject to extensive genomic screening. He examines the dilemmas and ethics of the use of prenatal diagnostic information in an era when medical geneticists and biotechnology companies offer whole genome prenatal screening—essentially searching for any disease-causing mutation. Hogan’s analysis is animated by ongoing scientific and scholarly debates about the extent to which the preventive focus in contemporary medical genetics resembles the aims of earlier eugenicists. Written for historians, sociologists, and anthropologists of science and medicine, as well as bioethics scholars, physicians, geneticists, and families affected by genetic conditions, Life Histories of Genetic Disease is a profound exploration of the scientific culture surrounding malformation and mutation.
This book covers the foundations of genes and heredity to give readers a solid understanding of what modern genetics has been built on, before examining the ways in which genetic testing is used to assess genetic risk.
A CRITICAL NEW APPROACH FOR LEARNING AND THRIVING IN A FIELD OF CHANGE The scope and responsibilities of today's genetic counselors exceed the reasonable capacity of any one educational resource. While the field's first-year curriculum may be relatively fixed, the landscape of what comes after that -- a dizzying mix of practice, ethics, research design, and professional competencies -- is increasingly broad. Advanced Genetic Counseling offers an overdue extension of the field's core curriculum. From navigating ethical dilemmas and potential conflicts of interest to confronting the biases and patterns of thought that can limit counselors' interactions with clients, it prepares readers to face the profession's most challenging aspects with confidence. Drawing on techniques from psychotherapy, social psychology, and health behavior, Advanced Genetic Counseling is an essential resource for trainees and mid-career professionals. It offers a roadmap not just for addressing client needs, but for the future of genetic counseling education.
A thoughtful new look at the entwined histories of genetic medicine and eugenics, with probing discussion of the moral risks of seeking human perfection
A renowned biologist provides a sweeping chronicle of more than four billion years of life on Earth, shedding new light on evolutionary theory and history, sexual selection, speciation, extinction, and genetics.