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Author: Gareth M. Thomas Publisher: Routledge ISBN: 1317338200 Category : Health & Fitness Languages : en Pages : 200
Book Description
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.
Author: Gareth M. Thomas Publisher: Taylor & Francis ISBN: 1317338219 Category : Health & Fitness Languages : en Pages : 200
Book Description
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.
Author: Chris Kaposy Publisher: MIT Press ISBN: 0262546248 Category : Science Languages : en Pages : 237
Book Description
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.
Author: Kieron Smith Publisher: John Hunt Publishing ISBN: 1780990715 Category : Family & Relationships Languages : en Pages : 90
Book Description
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.
Author: Sharon R. Kaufman Publisher: Duke University Press ISBN: 0822375508 Category : Health & Fitness Languages : en Pages : 336
Book Description
Most of us want and expect medicine’s miracles to extend our lives. In today’s aging society, however, the line between life-giving therapies and too much treatment is hard to see—it’s being obscured by a perfect storm created by the pharmaceutical and biomedical industries, along with insurance companies. In Ordinary Medicine Sharon R. Kaufman investigates what drives that storm’s “more is better” approach to medicine: a nearly invisible chain of social, economic, and bureaucratic forces that has made once-extraordinary treatments seem ordinary, necessary, and desirable. Since 2002 Kaufman has listened to hundreds of older patients, their physicians and family members express their hopes, fears, and reasoning as they faced the line between enough and too much intervention. Their stories anchor Ordinary Medicine. Today’s medicine, Kaufman contends, shapes nearly every American’s experience of growing older, and ultimately medicine is undermining its own ability to function as a social good. Kaufman’s careful mapping of the sources of our health care dilemmas should make it far easier to rethink and renew medicine’s goals.
Author: Scott Frickel Publisher: Rutgers University Press ISBN: 0813585910 Category : Education Languages : en Pages : 260
Book Description
Interdisciplinarity has become a buzzword in academia, as research universities funnel their financial resources toward collaborations between faculty in different disciplines. In theory, interdisciplinary collaboration breaks down artificial divisions between different departments, allowing more innovative and sophisticated research to flourish. But does it actually work this way in practice? Investigating Interdisciplinary Collaboration puts the common beliefs about such research to the test, using empirical data gathered by scholars from the United States, Canada, and Great Britain. The book’s contributors critically interrogate the assumptions underlying the fervor for interdisciplinarity. Their attentive scholarship reveals how, for all its potential benefits, interdisciplinary collaboration is neither immune to academia’s status hierarchies, nor a simple antidote to the alleged shortcomings of disciplinary study. Chapter 10 is available Open Access here (https://www.ncbi.nlm.nih.gov/books/NBK395883)
Author: Rayna Rapp Publisher: Routledge ISBN: 1135963924 Category : Social Science Languages : en Pages : 376
Book Description
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.
Author: Publisher: Elsevier ISBN: 0444543007 Category : Medical Languages : en Pages : 273
Book Description
Down syndrome (DS) is the most common example of neurogenetic aneuploid disorder leading to mental retardation. In most cases, DS results from an extra copy of chromosome 21 (HSA21) producing deregulated gene expression in brain that gives raise to subnormal intellectual functioning. The topic of this volume is of broad interest for the neuroscience community, because it tackles the concept of neurogenomics, that is, how the genome as a whole contributes to a neurodevelopmental cognitive disorders, such as DS, and thus to the development, structure and function of the nervous system. This volume of Progress in Brain Research discusses comparative genomics, gene expression atlases of the brain, network genetics, engineered mouse models and applications to human and mouse behavioral and cognitive phenotypes. It brings together scientists of diverse backgrounds, by facilitating the integration of research directed at different levels of biological organization, and by highlighting translational research and the application of the existing scientific knowledge to develop improved DS treatments and cures. Leading authors review the state-of-the-art in their field of investigation and provide their views and perspectives for future research Chapters are extensively referenced to provide readers with a comprehensive list of resources on the topics covered All chapters include comprehensive background information and are written in a clear form that is also accessible to the non-specialist
Author: Tom Waidzunas Publisher: U of Minnesota Press ISBN: 1452945527 Category : Social Science Languages : en Pages : 357
Book Description
To be taken seriously, therapies that claim to “cure” homosexuality wrap themselves in lab coats. Even though the fit is bad, and such therapies and their theorists now inhabit the scientific fringe, the science of sexuality has made some adjustments, too, Tom Waidzunas tells us in this provocative work. Intervening in the politics of sexuality and science, The Straight Line argues that scientific definitions of sexual orientation do not merely reflect the results of investigations into human nature, but rather emerge through a process of social negotiation between opposing groups. The demedicalization of homosexuality and the discrediting of reparative therapies, ex-gay ministries, and reorientation research have, Waidzunas contends, required scientists to enforce key boundaries around scientific expertise and research methods. Drawing on extensive participant observation at conferences for ex-gays, reorientation therapists, mainstream psychologists, and survivors of ex-gay therapy, as well as interviews with experts and activists, The Straight Line traces reorientation debates in the United States from the 1950s to the present, following homosexuality therapies from the mainstream to the margins. As the ex-gay movement has become increasingly transnational in recent years, Waidzunas turns to Uganda, where ideas about the scientific nature of homosexuality influenced the passage of the Anti-Homosexuality Act of 2014. While most studies treat the ex-gay movement as a religious phenomenon, this book looks at how the movement, in its attempts to establish legitimacy, has engaged with scientific institutions, shaping virulent anti-gay public policy.
Author: Genetic Alliance Publisher: Lulu.com ISBN: 0982162219 Category : Biology Languages : en Pages : 104
Book Description
The purpose of this manual is to provide an educational genetics resource for individuals, families, and health professionals in the New York - Mid-Atlantic region and increase awareness of specialty care in genetics. The manual begins with a basic introduction to genetics concepts, followed by a description of the different types and applications of genetic tests. It also provides information about diagnosis of genetic disease, family history, newborn screening, and genetic counseling. Resources are included to assist in patient care, patient and professional education, and identification of specialty genetics services within the New York - Mid-Atlantic region. At the end of each section, a list of references is provided for additional information. Appendices can be copied for reference and offered to patients. These take-home resources are critical to helping both providers and patients understand some of the basic concepts and applications of genetics and genomics.
Author: Alison Piepmeier Publisher: NYU Press ISBN: 1479816639 Category : Social Science Languages : en Pages : 195
Book Description
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.
Author: Gareth M. Thomas
Author: Gareth M. Thomas
Author: Chris Kaposy
Author: Kieron Smith
Author: Sharon R. Kaufman
Author: Scott Frickel
Author: Rayna Rapp
Author: 
Author: Tom Waidzunas
Author: Genetic Alliance
Author: Alison Piepmeier