Download or read book Down s Syndrome Screening and Reproductive Politics written by Gareth M. Thomas and published by Routledge. This book was released on 2017-03-16 with total page 251 pages. Available in PDF, EPUB and Kindle. Book excerpt: Nominated for the Foundation of Sociology of Health and Illness Book Prize 2018 In the UK and beyond, Down’s syndrome screening has become a universal programme in prenatal care. But why does screening persist, particularly in light of research that highlights pregnant women’s ambivalent and problematic experiences with it? Drawing on an ethnography of Down’s syndrome screening in two UK clinics, Thomas explores how and why we are so invested in this practice and what effects this has on those involved. Informed by theoretical approaches that privilege the mundane and micro practices, discourses, materials, and rituals of everyday life, Down’s Syndrome Screening and Reproductive Politics describes the banal world of the clinic and, in particular, the professionals contained within it who are responsible for delivering this programme. In so doing, it illustrates how Down’s syndrome screening is ‘downgraded’ and subsequently stabilised as a ‘routine’ part of a pregnancy. Further, the book captures how this routinisation is deepened by a systematic, but subtle, framing of Down’s syndrome as a negative pregnancy outcome. By unpacking the complex relationships between professionals, parents, technology, policy, and clinical practice, Thomas identifies how and why screening is successfully routinised and how it is embroiled in both new and familiar debates surrounding pregnancy, ethics, choice, diagnosis, care, disability, and parenthood. The book will appeal to academics, students, and professionals interested in medical sociology, medical anthropology, science and technology studies (STS), bioethics, genetics, and/or disability studies.

Download or read book The Politics of Down Syndrome written by Kieron Smith and published by John Hunt Publishing. This book was released on 2011-09-30 with total page 90 pages. Available in PDF, EPUB and Kindle. Book excerpt: Are we a more accepting society than ever before? Is there no longer a them and us division between the disabled and everybody else? The Politics of Down Syndrome looks at how we got to where we are today, from the racist roots of its identification to the rising number of abortions today. Down syndrome is the most common syndrome in the world, shared by all classes and races, yet it's one we rarely address our feelings about, head on. This book, although direct and questioning, takes a positive view about where we go from here and the opportunity for society to fully enjoy the benefits of being inclusive.

Download or read book Unexpected written by Alison Piepmeier and published by NYU Press. This book was released on 2021-02-23 with total page 214 pages. Available in PDF, EPUB and Kindle. Book excerpt: What prenatal tests and down syndrome reveal about our reproductive choices When Alison Piepmeier—scholar of feminism and disability studies, and mother of Maybelle, an eight-year-old girl with Down syndrome—died of cancer in August 2016, she left behind an important unfinished manuscript about motherhood, prenatal testing, and disability. In Unexpected, George Estreich and Rachel Adams pick up where she left off, honoring the important research of their friend and colleague, as well as adding new perspectives to her work. Based on interviews with parents of children with Down syndrome, as well as women who terminated their pregnancies because their fetus was identified as having the condition, Unexpected paints an intimate, nuanced picture of reproductive choice in today’s world. Piepmeier takes us inside her own daughter’s life, showing how Down syndrome is misunderstood, stigmatized, and condemned, particularly in the context of prenatal testing. At a time when medical technology is rapidly advancing, Unexpected provides a much-needed perspective on our complex, and frequently troubling, understanding of Down syndrome.

Download or read book Testing Women Testing the Fetus written by Rayna Rapp and published by Routledge. This book was released on 2004-11-23 with total page 377 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rich with the voices and stories of participants, these touching, firsthand accounts examine how women of diverse racial, ethnic, class and religious backgrounds perceive prenatal testing, the most prevalent and routinized of the new reproducing technologies. Based on the author's decade of research and her own personal experiences with amniocentesis, Testing Women, Testing the Fetus explores the "geneticization" of family life in all its complexity and diversity.

Download or read book Choosing Down Syndrome written by Chris Kaposy and published by MIT Press. This book was released on 2022-08-09 with total page 237 pages. Available in PDF, EPUB and Kindle. Book excerpt: An argument that more people should have children with Down syndrome, written from a pro-choice, disability-positive perspective. The rate at which parents choose to terminate a pregnancy when prenatal tests indicate that the fetus has Down syndrome is between 60 and 90 percent. In Choosing Down Syndrome, Chris Kaposy offers a carefully reasoned ethical argument in favor of choosing to have such a child. Arguing from a pro-choice, disability-positive perspective, Kaposy makes the case that there is a common social bias against cognitive disability that influences decisions about prenatal testing and terminating pregnancies, and that more people should resist this bias by having children with Down syndrome. Drawing on accounts by parents of children with Down syndrome, and arguing for their objectivity, Kaposy finds that these parents see themselves and their families as having benefitted from having a child with Down syndrome. To counter those who might characterize these accounts as based on self-deception or expressing adaptive preference, Kaposy cites supporting evidence, including divorce rates and observational studies showing that families including children with Down syndrome typically function well. Himself the father of a child with Down syndrome, Kaposy argues that cognitive disability associated with Down syndrome does not lead to diminished well-being. He argues further that parental expectations are influenced by neoliberal ideologies that unduly focus on the supposed diminished economic potential of a person with Down syndrome. Kaposy does not advocate restricting access to abortion or prenatal testing for Down syndrome, and he does not argue that it is ethically mandatory in all cases to give birth to a child with Down syndrome. People should be free to make important decisions based on their values. Kaposy's argument shows that it may be consistent with their values to welcome a child with Down syndrome into the family.

Download or read book Assessing Genetic Risks written by Institute of Medicine and published by National Academies Press. This book was released on 1994-01-01 with total page 353 pages. Available in PDF, EPUB and Kindle. Book excerpt: Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.

Download or read book Disability Normalcy and the Everyday written by Gareth M. Thomas and published by Routledge. This book was released on 2018-03-09 with total page 333 pages. Available in PDF, EPUB and Kindle. Book excerpt: Many critical analyses of disability address important ‘macro’ concerns, but are often far removed from an interactional and micro-level focus. Written by leading scholars in the field, and containing a range of theoretical and empirical contributions from around the world, this book focuses on the taken-for-granted, mundane human activities at the heart of how social life is reproduced, and how this impacts on the lives of those with a disability, family members, and other allies. It departs from earlier accounts by making sense of how disability is lived, mobilised, and enacted in everyday lives. Although broad in focus and navigating diverse social contexts, chapters are united by a concern with foregrounding micro, mundane moments for making sense of powerful discourses, practices, affects, relations, and world-making for disabled people and their allies. Using different examples – including learning disabilities, cerebral palsy, dementia, polio, and Parkinson’s disease – contributions move beyond a simplified narrow classification of disability which creates rigid categories of existence and denies bodily variation. Disability, Normalcy, and the Everyday should be considered essential reading for disability studies students and academics, as well as professionals involved in health and social care. With contributions located within new and familiar debates around embodiment, stigma, gender, identity, inequality, care, ethics, choice, materiality, youth, and representation, this book will be of interest to academics from different disciplinary backgrounds including sociology, anthropology, humanities, public health, allied health professions, science and technology studies, social work, and social policy.

Download or read book The Tentative Pregnancy written by Barbara Katz Rothman and published by Penguin Group. This book was released on 1987 with total page 298 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Download or read book The Abortion Act 1967 written by Sally Sheldon and published by Cambridge University Press. This book was released on 2022-11-30 with total page 361 pages. Available in PDF, EPUB and Kindle. Book excerpt: Biography of the Abortion Act, exploring how it was shaped by and shaped a changing UK.

Download or read book An Ordinary Future written by Thomas W Pearson and published by Univ of California Press. This book was released on 2023-09-05 with total page 221 pages. Available in PDF, EPUB and Kindle. Book excerpt: This vivid portrait of contemporary parenting blends memoir and cultural analysis to explore evolving ideas of disability and human difference. An Ordinary Future is a deeply moving work that weaves an account of Margaret Mead's path to disability rights activism with one anthropologist's experience as the parent of a child with Down syndrome. With this book, Thomas W. Pearson confronts the dominant ideas, disturbing contradictions, and dramatic transformations that have shaped our perspectives on disability over the last century. Pearson examines his family's story through the lens of Mead's evolving relationship to disability—a topic once so stigmatized that she advised Erik Erikson to institutionalize his son, born with Down syndrome in 1944. Over the course of her career, Mead would become an advocate for disability rights and call on anthropology to embrace a wider understanding of humanity that values diverse bodies and minds. Powerful and personal, An Ordinary Future reveals why this call is still relevant in the ongoing fight for disability justice and inclusion, while shedding light on the history of Down syndrome and how we raise children born different.

Download or read book Prenatal Genetic Testing Abortion and Disability Justice written by Amber Knight and published by Oxford University Press. This book was released on 2023-03-23 with total page 225 pages. Available in PDF, EPUB and Kindle. Book excerpt: The routinization of non-invasive prenatal genetic testing (NIPT) raises urgent questions about disability rights and reproductive justice. Supporters defend NIPT on the grounds that genetic information about the fetus helps would-be parents make better family planning choices. Prenatal Genetic Testing, Abortion, and Disability Justice challenges that assessment by exploring how NIPT can actually constrain pregnant women's options. Prospective parents must balance a complicated array of factors, including the familial, social, and financial support they can reasonably expect to receive if they choose to carry a disabled fetus to term and raise after birth, causing many pregnant women to "choose" termination. Focusing on the US, the book explores the intent and effects of prenatal screening in connection to women's bodily autonomy and disability rights, addressing themes at the intersection of genetic medicine, policymaking, critical disabilities studies, and political theory. Knight and Miller shift debates about reprogenetics from bioethics to political practice, as well as thoroughly critiquing the neoliberal state and the eugenic technologies that support it. Providing concrete suggestions for reforming medical practice, welfare policy, and cultural norms surrounding disability, this book highlights sites of necessary reform to envision how prospective parents can make truly free choices about prenatal genetic testing and selection abortion.

Download or read book The Oxford Handbook of Philosophy and Disability written by Adam Cureton and published by Oxford University Press. This book was released on 2020-05-14 with total page 944 pages. Available in PDF, EPUB and Kindle. Book excerpt: Disability raises profound and fundamental issues: questions about human embodiment and well-being; dignity, respect, justice and equality; personal and social identity. It raises pressing questions for educational, health, reproductive, and technology policy, and confronts the scope and direction of the human and civil rights movements. Yet it is only recently that disability has become the subject of the sustained and rigorous philosophical inquiry that it deserves. The Oxford Handbook of Philosophy and Disability is the first comprehensive volume on the subject. The volume's contents range from debates over the definition of disability to the challenges posed by disability for justice and dignity; from the relevance of disability for respect, other interpersonal attitudes, and intimate relationships to its significance for health policy, biotechnology, and human enhancement; from the ways that disability scholarship can enrich moral and political philosophy, to the importance of physical and intellectual disabilities for the philosophy of mind and action. The contributions reflect the variety of areas of expertise, intellectual orientations, and personal backgrounds of their authors. Some are founding philosophers of disability; others are promising new scholars; still others are leading philosophers from other areas writing on disability for the first time. Many have disabilities themselves. This volume boldly explores neglected issues, offers fresh perspectives on familiar ones, and ultimately expands philosophy's boundaries. More than merely presenting an overview of existing work, this Handbook will chart the growth and direction of a vital and burgeoning field for years to come.

Download or read book Neurodivergent Youthhoods written by Shelda-Jane Smith and published by Taylor & Francis. This book was released on 2023-08-01 with total page 171 pages. Available in PDF, EPUB and Kindle. Book excerpt: Adolescent rites of passage are ubiquitous sociocultural processes that feature across all manner of social activity. As transitional healthcare becomes an increasing fixture within paediatric and adolescent healthcare, this book captures how normative, biomedical and psychologised understandings of youth development permeate social life. Through an in-depth institutional ethnography of a UK teenage epilepsy clinic, Shelda-Jane Smith shows how the prevailing social expectation of transforming from a dependent child into an independent, self-sufficient adult becomes the organising principle of clinical care. Interrogating the everyday work of the clinic and the experiences of parental and professional caregivers, Smith explores how the move from paediatric to adult healthcare gets renegotiated in the context of severe and profound learning disabilities, questioning what happens to transitional processes when young people do not conform to the social standards and expectations of youthhood that are placed upon them. From exploring the fervent application of neuro-psychological developmental models to interrogating expectations of individual independence, Smith draws from the disciplines of Science and Technology Studies, Critical Psychology and Disability Studies and Medical Anthropology to provide an invaluable lens for unpacking the underlying assumptions and tensions of care provision when young people do not emerge into adulthood in socially expected ways.

Download or read book Screening written by Angela E. Raffle and published by Oxford University Press. This book was released on 2019-06-06 with total page 368 pages. Available in PDF, EPUB and Kindle. Book excerpt: Screening programmes involve the systematic offer of testing for populations or groups of apparently healthy people to identify individuals who may be at future risk of a particular medical condition or disease, with the aim of offering intervention to reduce their risk. For many years, screening was practised without debate, and without evidence, but in the 1960s serious challenges were raised about many of the screening procedures then being practised. Benefits and harms of screening must be measured in high quality trials, and the benefits of screening must be weighed alongside the negative side-effects. Concerns were raised about potential and actual harm arising when people without a health problem received dangerous and unnecessary investigations and treatments as a result of routine screening tests. Controversy raged, and it took some 50 years to achieve widespread recognition that evidence-based and quality assured programme delivery was essential, coupled with provision of balanced informed to enable informed choice for potential participants. Commercially motivated provision of poor quality and non-evidence based screening tests is increasing and screening remains a highly contested topic that has relevance in all health systems including for the general public and media. This book serves as a practical and comprehensive guide to all aspects of screening. Following the international success of the first edition, this second edition brings extensive updates and new case study material. The first section deals with concepts, methods, and evidence, charts the story of screening back to 1861, and covers all aspects of a screening programme and how to research the full consequences. The second section is a practical guide to sound policy-making and to high quality delivery of best value screening. The controversies, paradoxes, uncertainties, and ethical dilemmas of screening are explained, and each chapter is packed with examples, real-life case histories, helpful summary points, and self-test questions. Reference is made to the NHS, a leader in screening, but the primary focus is on universal principles, making the book highly relevant across the globe.

Download or read book Reproduction Health and Medicine written by Elizabeth Mitchell Armstrong and published by Emerald Group Publishing. This book was released on 2019-11-22 with total page 321 pages. Available in PDF, EPUB and Kindle. Book excerpt: At a moment when reproduction is increasingly politicized, the volume explores the breadth of contemporary research on reproduction from the perspective of medical sociology, illuminating the lived experience of reproduction and offering insights to inform sociology and health policy.

Download or read book We Are All Monsters written by Andrew Mangham and published by MIT Press. This book was released on 2023-02-14 with total page 343 pages. Available in PDF, EPUB and Kindle. Book excerpt: How the monsters of nineteenth-century literature and science came to define us. “Was I then a monster, a blot upon the earth, from which all men fled and whom all men disowned?” In We Are All Monsters, Andrew Mangham offers a fresh interpretation of this question uttered by Frankenstein’s creature in Mary Shelley’s 1818 novel in an expansive exploration of how nineteenth-century literature and science recast the monster as vital to the workings of nature and key to unlocking the knowledge of all life-forms and processes. Even as gothic literature and freak shows exploited an abiding association between abnormal bodies and horror, amazement, or failure, the development of monsters in the ideas and writings of this period showed the world to be dynamic, varied, plentiful, transformative, and creative. In works ranging from Comte de Buffon’s interrogations of humanity within natural history to Hugo de Vries’s mutation theory, and from Shelley’s artificial man to fin de siècle notions of body difference, Mangham expertly traces a persistent attempt to understand modern subjectivity through a range of biological and imaginary monsters. In a world that hides monstrosity behind theoretical and cultural representations that reinscribe its otherness, this enlightened book shows how innovative nineteenth-century thinkers dismantled the fictive idea of normality and provided a means of thinking about life in ways that check the reflexive tendency to categorize and divide.

Download or read book Prenatal Testing and Disability Rights written by Erik Parens and published by Georgetown University Press. This book was released on 2000-09-28 with total page 392 pages. Available in PDF, EPUB and Kindle. Book excerpt: As prenatal tests proliferate, the medical and broader communities perceive that such testing is a logical extension of good prenatal care—it helps parents have healthy babies. But prenatal tests have been criticized by the disability rights community, which contends that advances in science should be directed at improving their lives, not preventing them. Used primarily to decide to abort a fetus that would have been born with mental or physical impairments, prenatal tests arguably reinforce discrimination against and misconceptions about people with disabilities. In these essays, people on both sides of the issue engage in an honest and occasionally painful debate about prenatal testing and selective abortion. The contributors include both people who live with and people who theorize about disabilities, scholars from the social sciences and humanities, medical geneticists, genetic counselors, physicians, and lawyers. Although the essayists don't arrive at a consensus over the disability community's objections to prenatal testing and its consequences, they do offer recommendations for ameliorating some of the problems associated with the practice.