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Author: Bernice Elger
Publisher: Routledge
ISBN: 1317141466
Category : Law
Languages : en
Pages : 333
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Book Description
Following the boom in population databases in recent years there has been sustained and intense international debate about political processes and legal and ethical issues surrounding the protection and use of genetic data. As a result, several national and international organizations and committees have published widely differing guidelines and statements concerning genetic databases and biobanks. Ethical Issues of Human Genetic Databases compares the new area of biobanking with the tradition of ethically accepted classical research and highlights the distinctive features of existing databases and guidelines. The volume identifies areas of consensus and controversy while investigating the challenges posed to classical health research ethics by the existence of genetic databases, analyzing the reasons for such varying guidelines. The book will be essential to academics, biobankers, policy-makers and researchers in the field of medical ethics.
Author: Bernice Elger
Publisher: Routledge
ISBN: 1317141466
Category : Law
Languages : en
Pages : 333
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Book Description
Following the boom in population databases in recent years there has been sustained and intense international debate about political processes and legal and ethical issues surrounding the protection and use of genetic data. As a result, several national and international organizations and committees have published widely differing guidelines and statements concerning genetic databases and biobanks. Ethical Issues of Human Genetic Databases compares the new area of biobanking with the tradition of ethically accepted classical research and highlights the distinctive features of existing databases and guidelines. The volume identifies areas of consensus and controversy while investigating the challenges posed to classical health research ethics by the existence of genetic databases, analyzing the reasons for such varying guidelines. The book will be essential to academics, biobankers, policy-makers and researchers in the field of medical ethics.
Author: Oonagh Corrigan
Publisher: Routledge
ISBN: 1134373341
Category : Social Science
Languages : en
Pages : 228
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Book Description
Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for, and policy debates about, genetic databases. Drawing on original empirical research and theoretical debates in the fields of sociology, anthropology and legal studies, the contributors to this book challenge the prevailing orthodoxy of informed consent and explore the relationship between personal privacy and the public good. They also consider the multiple meanings attached to human tissue and the role of public consultations and commercial involvement in the creation and use of genetic databases. The authors argue that policy and regulatory frameworks produce a representation of participation that is often at odds with the experiences and understandings of those taking part. The findings present a serious challenge for public policy to provide mechanisms to safeguard the welfare of individuals participating in genetic databases.
Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309047986
Category : Medical
Languages : en
Pages : 353
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Book Description
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.
Author: National Research Council
Publisher: National Academies Press
ISBN: 0309184746
Category : Science
Languages : en
Pages : 101
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Book Description
This book assesses the scientific value and merit of research on human genetic differencesâ€"including a collection of DNA samples that represents the whole of human genetic diversityâ€"and the ethical, organizational, and policy issues surrounding such research. Evaluating Human Genetic Diversity discusses the potential uses of such collection, such as providing insight into human evolution and origins and serving as a springboard for important medical research. It also addresses issues of confidentiality and individual privacy for participants in genetic diversity research studies.
Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
ISBN: 0309452880
Category : Medical
Languages : en
Pages : 329
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Book Description
Genome editing is a powerful new tool for making precise alterations to an organism's genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions. Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.
Author: The Royal Society
Publisher: National Academies Press
ISBN: 0309671132
Category : Medical
Languages : en
Pages : 239
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Book Description
Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing. From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.
Author: Erin E Murphy
Publisher: Bold Type Books
ISBN: 1568584709
Category : Social Science
Languages : en
Pages : 399
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Book Description
Josiah Sutton was convicted of rape. He was five inches shorter and 65 pounds lighter than the suspect described by the victim, but at trial a lab analyst testified that his DNA was found at the crime scene. His case looked like many others -- arrest, swab, match, conviction. But there was just one problem -- Sutton was innocent. We think of DNA forensics as an infallible science that catches the bad guys and exonerates the innocent. But when the science goes rogue, it can lead to a gross miscarriage of justice. Erin Murphy exposes the dark side of forensic DNA testing: crime labs that receive little oversight and produce inconsistent results; prosecutors who push to test smaller and poorer-quality samples, inviting error and bias; law-enforcement officers who compile massive, unregulated, and racially skewed DNA databases; and industry lobbyists who push policies of "stop and spit." DNA testing is rightly seen as a transformative technological breakthrough, but we should be wary of placing such a powerful weapon in the hands of the same broken criminal justice system that has produced mass incarceration, privileged government interests over personal privacy, and all too often enforced the law in a biased or unjust manner. Inside the Cell exposes the truth about forensic DNA, and shows us what it will take to harness the power of genetic identification in service of accuracy and fairness.
Author: Agency for Healthcare Research and Quality/AHRQ
Publisher: Government Printing Office
ISBN: 1587634333
Category : Medical
Languages : en
Pages : 385
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Book Description
This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.
Author: I. Glenn Cohen
Publisher: Cambridge University Press
ISBN: 1108836615
Category : Law
Languages : en
Pages : 303
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Book Description
Examines the ethical, legal, and regulatory challenges presented as genomics become commonplace, easily available consumer products.
Author: Australia. Law Reform Commission
Publisher: Sydney : Australian Law Reform Commission
ISBN: 9780642732118
Category : Data protection
Languages : en
Pages : 441
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Book Description
13. Law enforcement issues
