Changing Moral Focus of Newborn Screening PDF Download
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Author: Edmund D. Pellegrino
Publisher: DIANE Publishing
ISBN: 1437921892
Category : Health & Fitness
Languages : en
Pages : 174
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Book Description
This is a print on demand edition of a hard to find publication. Nearly 4 million newborns undergo genetic screening (GS) every year in the U.S. Until recently such GS was limited to diseases that were well understood and for which effective treatments were available. Now, however, most mandatory GS programs also test for diseases that are not well understood and for which there is no available treatment. This white paper describes how the change in policy to include GS for untreatable as well as treatable diseases came about. It provides basic info. about the techniques of GS, and the practical and ethical choices parents must face. The Council believes that the potential benefits of mandatory, population-wide newborn GS for diseases for which there is no current treatment are outweighed by the potential harms.
Author: Edmund D. Pellegrino
Publisher: DIANE Publishing
ISBN: 1437921892
Category : Health & Fitness
Languages : en
Pages : 174
Get Book Here
Book Description
This is a print on demand edition of a hard to find publication. Nearly 4 million newborns undergo genetic screening (GS) every year in the U.S. Until recently such GS was limited to diseases that were well understood and for which effective treatments were available. Now, however, most mandatory GS programs also test for diseases that are not well understood and for which there is no available treatment. This white paper describes how the change in policy to include GS for untreatable as well as treatable diseases came about. It provides basic info. about the techniques of GS, and the practical and ethical choices parents must face. The Council believes that the potential benefits of mandatory, population-wide newborn GS for diseases for which there is no current treatment are outweighed by the potential harms.
Author:
Publisher:
ISBN:
Category : Medical screening
Languages : en
Pages : 150
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Book Description
Author: President's Council on Bioethics (U S )
Publisher: President's Council on Bioethics
ISBN: 9780160879029
Category : Health & Fitness
Languages : en
Pages : 168
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Book Description
Author: Dena S. Davis
Publisher: Oxford University Press
ISBN: 019537438X
Category : Health & Fitness
Languages : en
Pages : 222
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Book Description
What limits the genetic choices parents make for their children? Is it okay to select the sex of our children, or for deaf parents to select deaf children? In this second edition of Genetic Dilemmas, Davis argues that parental reproductive autonomy should be limited by respect for the future autonomy of the children created by these measures. Praise for the first edition: "A thoughtful, timely and comprehensive look at genetics in the modern era by a recognized scholar of both their legal and humanistic implications. An excellent read!" -R. Alta Charo, Professor of Law and Medical Ethics, University of Wisconsin- Madison. "Dena Davis has been the most consistent and important voice insisting that we take seriously the concept of each child's right to an open future, and what respecting that right would mean for new technologies in genetics and reproduction. This engaging new book is the work of a thoughtful and humane scholar, and deserves a broad readership." -Thomas H. Murray, President of The Hastings Center "Dena Davis offers an engaging, informative and provocative argument in Genetic Dilemmas. Her primary accomplishment is to draw much-needed attention to the interests of the child in reproductive decision-making...she has succeeded admirably." -Mary Terrell White, Medical Humanities Review "People now face a dizzying array of choices about reproduction-from sex selection to cloning, from prenatal screening to genetic enhancement. In this engaging and path-breaking book, Dena Davis intelligently and compassionately explores the often-ignored impact of these choices on the children that are created and the society in which they will be raised." -Lori Andrews, Professor of Law, Chicago-Kent College of Law
Author: Karen H. Rothenberg
Publisher: Oxford University Press, USA
ISBN: 0199309353
Category : Education
Languages : en
Pages : 241
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Book Description
Through the use of dramatic narratives, The Drama of DNA brings to life the complexities raised by the application of genomic technologies to health care and diagnosis. This creative, pedagogical approach shines a unique light on the ethical, psychosocial, and policy challenges that emerge as comprehensive sequencing of the human genome transitions from research to clinical medicine. Narrative genomics aims to enhance understanding of how we evaluate, process, and share genomic information, and to cultivate a deeper appreciation for difficult decisions encountered by health care professionals, bioethicists, families, and society as this technology reaches the bedside. This innovative book includes both original genomic plays and theatrical excerpts that illuminate the implications of genomic information and emerging technologies for physicians, scientists, counselors, patients, blood relatives, and society. In addition to the plays, the authors provide an analytical foundation to frame the many challenges that often arise.
Author: Karen H. Rothenberg JD, MPA
Publisher: Oxford University Press
ISBN: 0199373159
Category : Medical
Languages : en
Pages : 241
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Book Description
Through the use of dramatic narratives, The Drama of DNA brings to life the complexities raised by the application of genomic technologies to health care and diagnosis. This creative, pedagogical approach shines a unique light on the ethical, psychosocial, and policy challenges that emerge as comprehensive sequencing of the human genome transitions from research to clinical medicine. Narrative genomics aims to enhance understanding of how we evaluate, process, and share genomic information, and to cultivate a deeper appreciation for difficult decisions encountered by health care professionals, bioethicists, families, and society as this technology reaches the bedside. This innovative book includes both original genomic plays and theatrical excerpts that illuminate the implications of genomic information and emerging technologies for physicians, scientists, counselors, patients, blood relatives, and society. In addition to the plays, the authors provide an analytical foundation to frame the many challenges that often arise.
Author: Tom Koch
Publisher: MIT Press
ISBN: 0262526786
Category : Medical
Languages : en
Pages : 373
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Book Description
An argument against the “lifeboat ethic” of contemporary bioethics that views medicine as a commodity rather than a tradition of care and caring. Bioethics emerged in the 1960s from a conviction that physicians and researchers needed the guidance of philosophers in handling the issues raised by technological advances in medicine. It blossomed as a response to the perceived doctor-knows-best paternalism of the traditional medical ethic and today plays a critical role in health policies and treatment decisions. Bioethics claimed to offer a set of generally applicable, universally accepted guidelines that would simplify complex situations. In Thieves of Virtue, Tom Koch contends that bioethics has failed to deliver on its promises. Instead, he argues, bioethics has promoted a view of medicine as a commodity whose delivery is predicated not on care but on economic efficiency. At the heart of bioethics, Koch writes, is a “lifeboat ethic” that assumes “scarcity” of medical resources is a natural condition rather than the result of prior economic, political, and social choices. The idea of natural scarcity requiring ethical triage signaled a shift in ethical emphasis from patient care and the physician's responsibility for it to neoliberal accountancies and the promotion of research as the preeminent good. The solution to the failure of bioethics is not a new set of simplistic principles. Koch points the way to a transformed medical ethics that is humanist, responsible, and defensible.
Author: Rossella Parini
Publisher: John Libbey Eurotext
ISBN: 2742013431
Category : Medical
Languages : en
Pages : 195
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Book Description
Over the past 15 years, great progress has been made in the research of lysosomal storage diseases. These incurable illnesses have gradually become illnesses for which treatments, or at the very least improvements, have become possible. In addition to stem cell transfusion, other therapeutic approaches have developed. The sooner the treatment is administered, the more effective it is. For this reason, it is essential for paediatricians, surgeons and neurologists to identify these illnesses from onset of the first signs and therefore, sound knowledge is important. The possibility of screening for lysosomal storage diseases during routine neonatal examination is also under consideration. The aim is also to improve the quality of life of patients via specialised centres in which multidisciplinary therapies may be implemented. This work presents the latest epidemiological, biochemical, genetic, and pathogenetic knowledge, the clinical aspects of these illnesses and the different therapeutic options.
Author: Ginette A. Pepper
Publisher: Springer Publishing Company
ISBN: 0826157548
Category : Medical
Languages : en
Pages : 402
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Book Description
Print+CourseSmart
Author: Diane B. Paul
Publisher: JHU Press
ISBN: 1421411326
Category : Medical
Languages : en
Pages : 316
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Book Description
Named one of the "Ten must-read science histories" by Science Magazine 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.
