Telling Genes


Book Description

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.




Telling Genes


Book Description

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. -- Troy Duster, Chancellor'




Proud Boys and the White Ethnostate


Book Description

What is the alt-right? What do they believe, and how did they take center stage in the American social and political consciousness? Historian Alexandra Minna Stern excavates the alt-right memes that have erupted online and digs to the root of the far right’s motivations: their deep-seated fear of an oncoming “white genocide” that can only be remedied through aggressive action to reclaim white power. The alt-right has expanded significantly throughout America’s cultural, political, and digital landscapes: racist, sexist, and homophobic beliefs that were previously unspeakable have become commonplace, normalized, and accepted—endangering American democracy and society as a whole. When asked to address the Proud Boys and growing far right violence, President Trump directed the group to “stand back and stand by;” and just two weeks before President Joe Biden’s inauguration, a white supremacist mob breached the US Capitol—earning praise from the Proud Boys leader amongst threats of future violence. In order to dismantle the destructive movement that has invaded our public consciousness and threatens American democracy, we must first understand the core beliefs that drive the alt-right. Through careful analysis, Stern brings awareness to the underlying concepts that guide the alt-right and its overlapping forms of racism, xenophobia, and transphobia. She explains the key ideas of “red-pilling,” strategic trolling, gender essentialism, and the alt-right’s ultimate fantasy: a future where minorities have been “cleansed” from the body politic and a white ethnostate is established in the United States. By unearthing the hidden mechanisms that power white nationalism, Stern reveals just how pervasive the far right truly is.




Disability Dialogues


Book Description

"The author argues that postwar clinical professionals resisted adopting more positive, accepting, and sociopolitical perspectives on people with disabilities, as were espoused by self-advocates and family advocates, primarily owing to concerns about professional role, identity, and prestige"--




The PKU Paradox


Book Description

How did a disease of marginal public health significance acquire paradigmatic status in public health and genetics? In a lifetime of practice, most physicians will never encounter a single case of PKU. Yet every physician in the industrialized world learns about the disease in medical school and, since the early 1960s, the newborn heel stick test for PKU has been mandatory in many countries. Diane B. Paul and Jeffrey P. Brosco’s beautifully written book explains this paradox. PKU (phenylketonuria) is a genetic disorder that causes severe cognitive impairment if it is not detected and treated with a strict and difficult diet. Programs to detect PKU and start treatment early are deservedly considered a public health success story. Some have traded on this success to urge expanded newborn screening, defend basic research in genetics, and confront proponents of genetic determinism. In this context, treatment for PKU is typically represented as a simple matter of adhering to a low-phenylalanine diet. In reality, the challenges of living with PKU are daunting. In this first general history of PKU, a historian and a pediatrician explore how a rare genetic disease became the object of an unprecedented system for routine testing. The PKU Paradox is informed by interviews with scientists, clinicians, policymakers, and individuals who live with the disease. The questions it raises touch on ongoing controversies about newborn screening and what happens to blood samples collected at birth.




DNA Is Not Destiny


Book Description

“[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.




Personal Genome Medicine


Book Description

Draws from the past and present of medicine in the U.S. to address the emerging future of personal genome medicine.




Wondergenes


Book Description

Wondergenes not only imagines a future world in which genetic enhancement is the norm, but asserts that this future has already begun. Genetically engineered substances are already in use by athletes, in vitro fertilization already provides the primitive means by which parents can "select" an embryo, and the ability to create new forms of genetically engineered human beings is not far off. What happens when gene therapy becomes gene enhancement? Who will benefit and who might be left behind? What are the costs to our values and beliefs, and to the future of our society? To answer these questions, Maxwell J. Mehlman provides an overview of the scientific advances that have led to the present state of genetic enhancement and explains how these advances will be used in the future to redefine what we think of as a normal human being. He explores the ethical dilemmas already facing researchers and medical practitioners, and the dilemmas we will all be expected to face. In his forecast of the dangers inherent in this technology, he is particularly concerned with the emergence of a "genobility" made up of those able to afford increasingly expensive enhancement. Wondergenes is a serious, accessible introduction to the social and personal implications of genetic engineering. Mehlman weighs the social and economic costs of the many proposals to regulate or limit genetic engineering and provides six concrete policy recommendations -- from professional licensing to a ban on germ-line enhancement -- that propose to make the future of genetic enhancement more equitable and safe.




50 Genetics Ideas You Really Need to Know


Book Description

In recent years knowledge of our genetic code has changed our understanding of life on Earth. New genetic technologies are transforming the way we live and promise treatments for otherwise incurable diseases. But these advances are also generating controversy, particularly surrounding issues such as cloning and designer babies. In 50 Genetics Ideas, Mark Henderson distills the central ideas of genetics in a series of clear and concise essays. Beginning with the theory of evolution, and covering such topics as the genome and how nature and nurture work together, he not only illuminates the role of genes in shaping our behaviour and sexuality, but also the very latest, cutting-edge developments in gene therapy and artificial life. Accessible and informative, 50 Genetics Ideas is a timely introduction to this young and ground-breaking strand of science.




Familial Fitness


Book Description

Introduction. Disability and belonging in adoption history -- Expecting normality: 1918-1955. Exclusionary practices in the age of eugenics and child welfare ; Risk equivalence and the postwar family -- Working toward inclusion: 1955-1980. Love, acceptance, and the narrative of overcoming ; From overcoming to programmatic solutions -- Continued obstacles: 1980-1997. Institutional and structural barriers to the adoption of children with disabilities ; The limits of inclusion -- Epilogue. A usable past: thinking about contemporary practice in light of history.