Author: Erik Parens
Publisher: Georgetown University Press
ISBN: 9781589013940
Category : Medical
Languages : en
Pages : 392
Book Description
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.
Prenatal Testing and Disability Rights
Author: Erik Parens
Publisher: Georgetown University Press
ISBN: 9781589013940
Category : Medical
Languages : en
Pages : 392
Book Description
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.
Publisher: Georgetown University Press
ISBN: 9781589013940
Category : Medical
Languages : en
Pages : 392
Book Description
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.
Tangled Diagnoses
Author: Ilana Löwy
Publisher: University of Chicago Press
ISBN: 022653426X
Category : History
Languages : en
Pages : 326
Book Description
Since the late nineteenth century, medicine has sought to foster the birth of healthy children by attending to the bodies of pregnant women, through what we have come to call prenatal care. Women, and not their unborn children, were the initial focus of that medical attention, but prenatal diagnosis in its present form, which couples scrutiny of the fetus with the option to terminate pregnancy, came into being in the early 1970s. Tangled Diagnoses examines the multiple consequences of the widespread diffusion of this medical innovation. Prenatal testing, Ilana Löwy argues, has become mainly a risk-management technology—the goal of which is to prevent inborn impairments, ideally through the development of efficient therapies but in practice mainly through the prevention of the birth of children with such impairments. Using scholarship, interviews, and direct observation in France and Brazil of two groups of professionals who play an especially important role in the production of knowledge about fetal development—fetopathologists and clinical geneticists—to expose the real-life dilemmas prenatal testing creates, this book will be of interest to anyone concerned with the sociopolitical conditions of biomedical innovation, the politics of women’s bodies, disability, and the ethics of modern medicine.
Publisher: University of Chicago Press
ISBN: 022653426X
Category : History
Languages : en
Pages : 326
Book Description
Since the late nineteenth century, medicine has sought to foster the birth of healthy children by attending to the bodies of pregnant women, through what we have come to call prenatal care. Women, and not their unborn children, were the initial focus of that medical attention, but prenatal diagnosis in its present form, which couples scrutiny of the fetus with the option to terminate pregnancy, came into being in the early 1970s. Tangled Diagnoses examines the multiple consequences of the widespread diffusion of this medical innovation. Prenatal testing, Ilana Löwy argues, has become mainly a risk-management technology—the goal of which is to prevent inborn impairments, ideally through the development of efficient therapies but in practice mainly through the prevention of the birth of children with such impairments. Using scholarship, interviews, and direct observation in France and Brazil of two groups of professionals who play an especially important role in the production of knowledge about fetal development—fetopathologists and clinical geneticists—to expose the real-life dilemmas prenatal testing creates, this book will be of interest to anyone concerned with the sociopolitical conditions of biomedical innovation, the politics of women’s bodies, disability, and the ethics of modern medicine.
Choosing Down Syndrome
Author: Chris Kaposy
Publisher: MIT Press
ISBN: 0262037718
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.
Publisher: MIT Press
ISBN: 0262037718
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.
Disability, Health, Law, and Bioethics
Author: I. Glenn Cohen
Publisher: Cambridge University Press
ISBN: 1108485979
Category : Health & Fitness
Languages : en
Pages : 313
Book Description
Examines how the framing of disability has serious implications for legal, medical, and policy treatments of disability.
Publisher: Cambridge University Press
ISBN: 1108485979
Category : Health & Fitness
Languages : en
Pages : 313
Book Description
Examines how the framing of disability has serious implications for legal, medical, and policy treatments of disability.
Born Well: Prenatal Genetics and the Future of Having Children
Author: Megan A. Allyse
Publisher:
ISBN: 9783030825379
Category :
Languages : en
Pages : 0
Book Description
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.
Publisher:
ISBN: 9783030825379
Category :
Languages : en
Pages : 0
Book Description
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.
Choosing Between Possible Lives
Author: Rosamund Scott
Publisher: Bloomsbury Publishing
ISBN: 1847313809
Category : Law
Languages : en
Pages : 390
Book Description
To what extent should parents be able to choose the kind of child they have? The unfortunate phrase 'designer baby' has become familiar in debates surrounding reproduction. As a reference to current possibilities the term is misleading, but the phrase may indicate a societal concern of some kind about control and choice in the course of reproduction. Typically, people can choose whether to have a child. They may also have an interest in choosing, to some extent, the conditions under which they do so, such as whether they have a child with a serious disability or disease. The purpose of this book is to explore the difficult and controversial question of the appropriate ethical and legal extent of reproductive autonomy in this context. The book examines ethical, legal and public policy issues in prenatal screening, prenatal diagnosis (PND), selective abortion and preimplantation genetic diagnosis (PGD). It explores the ethics of these selection practices and the ability of current ethical guidelines and legal mechanisms, including the law on selective abortion and wrongful birth, to deal with advances in genetic and other knowledge in these areas. Unlike in the United States, in England the relevant law is not inherently rights-based, but the impact of the Human Rights Act 1998 inevitably raises questions about the proper scope of reproductive autonomy in this context. The implications of the analysis are considered for the development of relevant law, public policy and ethical guidelines and will be of interest to academics in medical law and ethics, health professionals, lawyers, those working on public policy and students with an interest in these issues.
Publisher: Bloomsbury Publishing
ISBN: 1847313809
Category : Law
Languages : en
Pages : 390
Book Description
To what extent should parents be able to choose the kind of child they have? The unfortunate phrase 'designer baby' has become familiar in debates surrounding reproduction. As a reference to current possibilities the term is misleading, but the phrase may indicate a societal concern of some kind about control and choice in the course of reproduction. Typically, people can choose whether to have a child. They may also have an interest in choosing, to some extent, the conditions under which they do so, such as whether they have a child with a serious disability or disease. The purpose of this book is to explore the difficult and controversial question of the appropriate ethical and legal extent of reproductive autonomy in this context. The book examines ethical, legal and public policy issues in prenatal screening, prenatal diagnosis (PND), selective abortion and preimplantation genetic diagnosis (PGD). It explores the ethics of these selection practices and the ability of current ethical guidelines and legal mechanisms, including the law on selective abortion and wrongful birth, to deal with advances in genetic and other knowledge in these areas. Unlike in the United States, in England the relevant law is not inherently rights-based, but the impact of the Human Rights Act 1998 inevitably raises questions about the proper scope of reproductive autonomy in this context. The implications of the analysis are considered for the development of relevant law, public policy and ethical guidelines and will be of interest to academics in medical law and ethics, health professionals, lawyers, those working on public policy and students with an interest in these issues.
Quality of Life and Human Difference
Author: David Wasserman
Publisher: Cambridge University Press
ISBN: 0521832012
Category : Medical
Languages : en
Pages : 287
Book Description
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.
Publisher: Cambridge University Press
ISBN: 0521832012
Category : Medical
Languages : en
Pages : 287
Book Description
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.
Unexpected
Author: Alison Piepmeier
Publisher: NYU Press
ISBN: 147986546X
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.
Publisher: NYU Press
ISBN: 147986546X
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.
Keywords for Disability Studies
Author: Rachel Adams
Publisher: NYU Press
ISBN: 1479845639
Category : Law
Languages : en
Pages : 232
Book Description
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.
Publisher: NYU Press
ISBN: 1479845639
Category : Law
Languages : en
Pages : 232
Book Description
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.
Testing Women, Testing the Fetus
Author: Rayna Rapp
Publisher: Routledge
ISBN: 1135963924
Category : Social Science
Languages : en
Pages : 377
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.
Publisher: Routledge
ISBN: 1135963924
Category : Social Science
Languages : en
Pages : 377
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.