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.
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 2023-02-22 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 Perfecting Pregnancy written by Isabel Karpin and published by Cambridge University Press. This book was released on 2012-03-30 with total page 395 pages. Available in PDF, EPUB and Kindle. Book excerpt: Prenatal and preimplantation testing technologies have offered unprecedented access to information about the genetic and congenital makeup of our prospective progeny. Future developments such as preconception testing, non-intrusive prenatal testing and more extensive preimplantation testing promise to increase that access further still. The result may be greater reproductive choice, but it also increases the burden on women and men to avail themselves of these technologies in order to avoid having a child with a disability. The overwhelming question for legislators has been whether and, if so, how to regulate the use of these technologies in the face of compelling but seemingly contradictory claims about the advancement of reproductive choice and the dangers of eugenic or discriminatory effects. This book examines the evolution of this legislative oversight across a number of jurisdictions and explores the tensions and ambiguities that inform these laws.
Download or read book Quality of Life and Human Difference written by David Wasserman and published by Cambridge University Press. This book was released on 2005-05-09 with total page 287 pages. Available in PDF, EPUB and Kindle. Book excerpt: This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on health policy and quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics.
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 Prenatal Genetic Testing Technology written by United States. Congress. Senate. Committee on Commerce, Science, and Transportation. Subcommittee on Science, Technology, and Space and published by . This book was released on 2013 with total page 56 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book Women and Prenatal Testing written by Karen H. Rothenberg and published by Ohio State University Press. This book was released on 1994 with total page 332 pages. Available in PDF, EPUB and Kindle. Book excerpt: "For pregnant women in the 1990s, technological developments have ushered in new and expanding reproductive genetic testing options. Some herald these procedures as advances providing women with previously unavailable information about their pregnancies. Others contend that with this surge of information come increasing and perhaps unwarranted obligations: while some women have greater knowledge about their pregnancies, they also face far more complex decisions and a greater pressure to do as much as is technologically possible to ensure the birth of a healthy child." "This book focuses on the major women's issues surrounding the development and application of reproductive genetic testing. Although much has been written about the biological safety and efficacy of these technologies, few publications have addressed their psychological, sociocultural, ethical, legal, and political impact on women and their experience of pregnancy." "The first of three sections provides the contextual framework in which the debate should be analyzed. The second section sets forth the philosophical foundations and complex ethical and legal questions that need to be addressed, and the final section delineates a variety of perspectives on the psychological and sociocultural issues raised by reproductive genetic testing. These fourteen essays on the cutting edge of the debate are essential reading for anyone interested in women's studies, human genetics, health law; and bioethics and prenatal care providers."--BOOK JACKET.Title Summary field provided by Blackwell North America, Inc. All Rights Reserved
Download or read book Born Well Prenatal Genetics and the Future of Having Children written by Megan A. Allyse and published by . This book was released on 2022 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book brings together an international collection of experts in reproductive ethics, law, disability studies, and medicine to explore the challenging future of reproduction and children. From the medical to the social and from the financial to the legal, the authors explore the expanding impact of reproductive genetics on our society. New advances in genetic technologies are revolutionizing the practice of reproductive medicine. We have expanded our ability to detect genetic changes in embryos and fetuses in ways that potentially allow to identify, treat, or prevent a growing range of diseases. The development of gene-editing technologies raises questions about the possibility of removing disease-causing variants from embryos before pregnancy implantation. The growing sophistication of prenatal genomic sequencing offers us glimpses into the whole genome of the developing fetus. And, the increasingly sophisticated science of 'gene matching' allows us greater and greater foreknowledge of how the genomes of two individuals will combine in a future child. This is an indispensable book on the newest developments in bioethics caused by the sciences. Chapter 5 is available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.
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 Health Law and Bioethics written by I. Glenn Cohen and published by Cambridge University Press. This book was released on 2020-04-23 with total page 313 pages. Available in PDF, EPUB and Kindle. Book excerpt: Examines how the framing of disability has serious implications for legal, medical, and policy treatments of disability.
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 Miracle Boy Grows Up written by Ben Mattlin and published by Skyhorse Publishing Inc.. This book was released on 2012-08-14 with total page 209 pages. Available in PDF, EPUB and Kindle. Book excerpt: Describes how the author, an NPR commentator and professional writer who was born with spinal muscular atrophy, was expected to die in childhood but who with the support of a growing disability rights movement became one of the first students in a wheelchair to attend Harvard.
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 200 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 Keywords for Disability Studies written by Rachel Adams and published by NYU Press. This book was released on 2015-08-14 with total page 232 pages. Available in PDF, EPUB and Kindle. Book excerpt: Introduces key terms, concepts, debates, and histories for Disability Studies Keywords for Disability Studies aims to broaden and define the conceptual framework of disability studies for readers and practitioners in the field and beyond. The volume engages some of the most pressing debates of our time, such as prenatal testing, euthanasia, accessibility in public transportation and the workplace, post-traumatic stress, and questions about the beginning and end of life. Each of the 60 essays in Keywords for Disability Studies focuses on a distinct critical concept, including “ethics,” “medicalization,” “performance,” “reproduction,” “identity,” and “stigma,” among others. Although the essays recognize that “disability” is often used as an umbrella term, the contributors to the volume avoid treating individual disabilities as keywords, and instead interrogate concepts that encompass different components of the social and bodily experience of disability. The essays approach disability as an embodied condition, a mutable historical phenomenon, and a social, political, and cultural identity. An invaluable resource for students and scholars alike, Keywords for Disability Studies brings the debates that have often remained internal to disability studies into a wider field of critical discourse, providing opportunities for fresh theoretical considerations of the field’s core presuppositions through a variety of disciplinary perspectives. Visit keywords.nyupress.org for online essays, teaching resources, and more.
Download or read book Studies in Law Politics and Society written by Austin Sarat and published by Emerald Group Publishing. This book was released on 2019-06-10 with total page 200 pages. Available in PDF, EPUB and Kindle. Book excerpt: This special issue of Studies in Law, Politics and Society contains two sections, focusing on the interaction between law and religion, together with the ways in which the law simultaneously enhances and inhibits projects of social change.
Download or read book The Contradiction in Disability Law written by Smitha Nizar and published by Oxford University Press, USA. This book was released on 2016 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: While the Indian legislation on prenatal tests, the Pre-natal Diagnostic Techniques Act, 1994, prohibits the use of prenatal tests for sex-selection, it permits the use of these tests to pick out foetuses with disabilities. Further, the Medical Termination of Pregnancy Act, 1971 permits the termination of such lives. The author questions the breach of rights of persons with disabilities by studying the contradiction that exists between disability-selective abortion and disability rights. Analysing the legitimacy of an automatic decision to abort a foetus with disability, this book questions the unproblematic perception towards disability-selective abortions, but without entering the realm of a woman's right to take decisions about her body. While the Indian legislation on prenatal tests, the Pre-natal Diagnostic Techniques Act, 1994, prohibits the use of prenatal tests for sex-selection, it permits the use of these tests to pick out foetuses with disabilities. Further, the Medical Termination of Pregnancy Act, 1971 permits the termination of such lives. The author questions the breach of rights of persons with disabilities by studying the contradiction that exists between disability-selective abortion and disability rights. Analysing the legitimacy of an automatic decision to abort a foetus with disability, this book questions the unproblematic perception towards disability-selective abortions, but without entering the realm of a woman's right to take decisions about her body. While the Indian legislation on prenatal tests, the Pre-natal Diagnostic Techniques Act, 1994, prohibits the use of prenatal tests for sex-selection, it permits the use of these tests to pick out foetuses with disabilities. Further, the Medical Termination of Pregnancy Act, 1971 permits the termination of such lives. The author questions the breach of rights of persons with disabilities by studying the contradiction that exists between disability-selective abortion and disability rights. Analysing the legitimacy of an automatic decision to abort a foetus with disability, this book questions the unproblematic perception towards disability-selective abortions, but without entering the realm of a woman's right to take decisions about her body.
