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The Ethics And Governance Of Human Genetic Databases
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Book Synopsis The Ethics and Governance of Human Genetic Databases by : Matti Häyry
Download or read book The Ethics and Governance of Human Genetic Databases written by Matti Häyry and published by Cambridge University Press. This book was released on 2007-04-19 with total page 20 pages. Available in PDF, EPUB and Kindle. Book excerpt: The Medical Biobank of Umeå in Sweden, deCODE's Health Sector Database in Iceland, the Estonian Genome Project and the UK Biobank contain health data and genetic data from large populations. Some include genealogical or lifestyle information. They are resources for research in human genetics and medicine, exploring interaction between genes, lifestyle, environmental factors and health and diseases. The collection, storage and use of this data raise ethical, legal and social issues. In this book, first published in 2007, bioethics scholars examine whether existing ethical frameworks and social policies reflect people's concerns, and how they may need to change in light of new scientific and technological developments. The ethical issues of social justice, genetic discrimination, informational privacy, trust in science and consent to participation in database research are analyzed, whilst an empirical survey, conducted in the four countries, demonstrates public views of privacy and related moral values in the context of human genetic databases.
Book Synopsis Creation and Governance of Human Genetic Research Databases by : OECD
Download or read book Creation and Governance of Human Genetic Research Databases written by OECD and published by OECD Publishing. This book was released on 2006-10-25 with total page 160 pages. Available in PDF, EPUB and Kindle. Book excerpt: Summarises proceedings of a conference looking at examples of human genetic research databases, how they are established, how they are managed and governed, how they might be commercialised, and what the policy considerations might be.
Book Synopsis The Ethics and Governance of Human Genetic Databases by :
Download or read book The Ethics and Governance of Human Genetic Databases written by and published by . This book was released on 2007 with total page 283 pages. Available in PDF, EPUB and Kindle. Book excerpt: Bioethics scholars examine the ethical, legal and social questions raised by human genetic databases.
Book Synopsis The Ethics and Governance of Human Genetic Databases by : Matti Häyry
Download or read book The Ethics and Governance of Human Genetic Databases written by Matti Häyry and published by . This book was released on 2014-05-14 with total page 297 pages. Available in PDF, EPUB and Kindle. Book excerpt: Bioethics scholars examine the ethical, legal and social questions raised by human genetic databases.
Book Synopsis Populations and Genetics by : Bartha Maria Knoppers
Download or read book Populations and Genetics written by Bartha Maria Knoppers and published by BRILL. This book was released on 2003-12-01 with total page 668 pages. Available in PDF, EPUB and Kindle. Book excerpt: Genetic research and testing is not limited to individuals and their families. Increasingly, there is focus on communities and even whole populations. This raises legal and socio-ethical and issues that have not been addressed. In this age of international biobanking involving populations, are current legal and ethical approaches sufficient? This book of selected papers covers population research and banking as well as accompanying confidentiality, and governance concerns. Possible commercialization, patents, benefit sharing, discrimination, and the role of patient organizations and of developing countries are also discussed. New perspectives and models are provided. The book concludes with a Statement of Principles on the Ethical Conduct of Human Genetic Research Involving Populations. Policymakers, academics, legislators and researchers will find this book to be current and controversial. The human genome may be mapped but the legal and socio-ethical debate is far from over.
Book Synopsis Ethical Issues of Human Genetic Databases by : Bernice Elger
Download or read book Ethical Issues of Human Genetic Databases written by Bernice Elger and published by Routledge. This book was released on 2016-05-13 with total page 332 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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 :National Academies of Sciences, Engineering, and Medicine Publisher :National Academies Press ISBN 13 :0309452880 Total Pages :329 pages Book Rating :4.3/5 (94 download)
Book Synopsis Human Genome Editing by : National Academies of Sciences, Engineering, and Medicine
Download or read book Human Genome Editing written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2017-08-13 with total page 329 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Genetic Databases by : Oonagh Corrigan
Download or read book Genetic Databases written by Oonagh Corrigan and published by Routledge. This book was released on 2004-07-31 with total page 225 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Book Synopsis Principles and Practice in Biobank Governance by : Mark Stranger
Download or read book Principles and Practice in Biobank Governance written by Mark Stranger and published by Routledge. This book was released on 2016-04-15 with total page 316 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rapid technological advances, the establishment of large-scale biobanks, and the exchange of data across international boundaries raise a variety of questions for regulators struggling with the problem of how to govern such stores of information and the processes connected with them. Engaging with the pressing issues of privacy, consent, access to data, and benefit sharing, Principles and Practice in Biobank Governance draws together the latest empirical research from the UK, Europe, America, Australia and Asia to focus on these challenges. Current models of governance are critiqued, principles and policies are debated, and new models and theoretical frameworks are presented through this intellectually stimulating, informative volume. This truly international volume offers new insights from a range of disciplinary perspectives and will be essential reading for policy makers and scholars across a range of social sciences, including sociology, bioethics, law and social policy.
Book Synopsis Genetic Governance by : Robin Bunton
Download or read book Genetic Governance written by Robin Bunton and published by Psychology Press. This book was released on 2005 with total page 232 pages. Available in PDF, EPUB and Kindle. Book excerpt: Contributors look at how the 'new' genetics, healthcare and arising health policy can or should be governed and regulated, rather than focusing on individualistic ethical issues, this text takes a broader, international public health approach.
Download or read book Biobanks written by Herbert Gottweis and published by Routledge. This book was released on 2008-04-28 with total page 248 pages. Available in PDF, EPUB and Kindle. Book excerpt: In recent years, a number of large population-based biobanks – genetic databases that combine genetic information derived from blood samples with personal data about environment, medical history, lifestyle or genealogy – have been set up in order to study the interface between disease, and genetic and environmental factors. Unsurprisingly, these studies have sparked a good deal of controversy and the ethical and social implications have been widely debated. Biobanks: Governance in Comparative Perspective is the first book to explore the political and governance implications of biobanks in Europe, the United States, Asia, and Australia. This book explores: the interrelated conditions needed for a biobank to be created and to exist the rise of the new bio-economy the redefinition of citizenship accompanying national biobank developments This groundbreaking book makes clear that biobanks are a phenomenon that cannot be disconnected from considerations of power, politics, and the reshaping of current practices in governance. It will be a valuable read for scholars and students of genetics, bioethics, risk, public health and the sociology of health and illness.
Book Synopsis The Governance of Genetic Information by : Heather Widdows
Download or read book The Governance of Genetic Information written by Heather Widdows and published by Cambridge University Press. This book was released on 2009-09-03 with total page pages. Available in PDF, EPUB and Kindle. Book excerpt: This volume maps the areas of ethical concern in the debate regarding the governance of genetic information, and suggests alternative ethical frameworks and models of regulation in order to inform its restructuring. Genetic governance is at the heart of medical and scientific developments, and is connected to global exploitation, issues of commodification, commercialisation and ownership, the concepts of property and intellectual property and concerns about individual and communal identity. Thus the decisions that are made in the next few years about appropriate models of genetic governance will have knock-on effects for other areas of governance. In short the final answer to 'Who Decides?' in the context of genetic governance will fundamentally shape the ethical constructs of individuals and their networks and relationships in the public sphere.
Book Synopsis Society and Genetic Information by : Judit S ndor
Download or read book Society and Genetic Information written by Judit S ndor and published by Central European University Press. This book was released on 2003-01-01 with total page 430 pages. Available in PDF, EPUB and Kindle. Book excerpt: The genetic era has given rise to significant legal dilemmas: who may own genetic data, when can a genetic test be performed on children, how can genetic-based discrimination be avoided, or to what extent and in what ways can genetic data be protected? The book addresses the social, ethical, and legal implications of collecting, storing, analyzing, and commercializing genetic information. Prominent biologists, medical doctors, lawyers, anthropologists, philosophers, sociologists, and theologians from different countries provide their views on the complex biological and social impacts of the imminent proliferation of genetic information. The authors explore the various uses and applications of genetic information, and discuss the current dilemmas of making laws in the field of genetics. Different models of national genome projects and biobanks, as well as the related international legal documents and national laws are also discussed. Various genome projects and biobanks are analyzed in detail.
Book Synopsis Ethical Issues in Governing Biobanks by : Nikola Biller-Andorno
Download or read book Ethical Issues in Governing Biobanks written by Nikola Biller-Andorno and published by Routledge. This book was released on 2016-05-13 with total page 296 pages. Available in PDF, EPUB and Kindle. Book excerpt: Population genomics research drawing on genetic databases has expanded rapidly, with some of this information being combined in 'biobanks'. Managing this information in an appropriate way is a highly complex ethical issue in the health policy arena. This book combines theoretical and empirical research to analyze the areas of conflict and consensus in the regulatory and ethical frameworks that have been developed to govern biobanks. Ethicists from the Department of Ethics, Trade, Human Rights and Health Law (ETH) of the World Health Organization, the Institute of Biomedical Ethics of Geneva University and the Institute of Biomedical Ethics of the University of Zurich, with the support of the Geneva International Academic Network (GIAN), examine the conditions under which genetic databases can be established, kept, and made use of in an ethically acceptable way. In addition to a comprehensive review of the scientific literature and a comparative analysis of existing normative frameworks, they present the results of in-depth interviews with experts around the world concerning the most unresolved and controversial issues. The results of that study, combined with their normative analysis, leads to recommendations for a better international framework.
Book Synopsis Human Genetic Biobanks in Asia by : Margaret Sleeboom-Faulkner
Download or read book Human Genetic Biobanks in Asia written by Margaret Sleeboom-Faulkner and published by Routledge. This book was released on 2008-11-19 with total page 222 pages. Available in PDF, EPUB and Kindle. Book excerpt: This volume investigates human genetic biobanking and its regulation in various countries in Asia, including Japan, the People’s Republic of China, the Republic of China, Hong Kong, India and Indonesia.
Book Synopsis Ethics, Computing, and Genomics by : Herman T. Tavani
Download or read book Ethics, Computing, and Genomics written by Herman T. Tavani and published by Jones & Bartlett Learning. This book was released on 2006 with total page 382 pages. Available in PDF, EPUB and Kindle. Book excerpt: Comprised of eighteen chapters contributed by experts in the fields of biology, computer science, information technology, law, and philosophy, Ethics, Computing, and Genomics provides instructors with a flexible resource for undergraduate and graduate courses in an exciting new field of applied ethics: computational genomics. The chapters are organized in a way that takes the reader from a discussion of conceptual frameworks and methodological perspectives, including ethical theory, to an in-depth analysis of controversial issues involving privacy and confidentiality, information consent, and intellectual property. The volume concludes with some predictions about the future of computational genomics, including the role that nanotechnology will likely play as biotechnologies and information technologies continue to converge.
Author :Timothy A. Caulfield Publisher :Springer Science & Business Media ISBN 13 :9780306462870 Total Pages :224 pages Book Rating :4.4/5 (628 download)
Book Synopsis The Commercialization of Genetic Research by : Timothy A. Caulfield
Download or read book The Commercialization of Genetic Research written by Timothy A. Caulfield and published by Springer Science & Business Media. This book was released on 1999-12-31 with total page 224 pages. Available in PDF, EPUB and Kindle. Book excerpt: The rapid advances made in genetic research and technology over the last few decades have led to a host of important discoveries that have allowed for the detection (and hopefully soon the treatment) of a number of genetic conditions and diseases. Not surprisingly, these advances have also raised numerous ethical concerns about how result ing technologies will be implemented, and the impact they will have on different com munities. One particular concern is the enormous costs involved in conducting genetic research and the fact that the private sector has become heavily involved; the desire to commercialize the results and technology derived from genetic research is considered problematic. In September 1998, the Second International Conference on DNA Sampling, titled "The Commercialization of Genetic Research: Ethical, Legal and Policy Issues," was held of the conference, and of this book, was to in Edmonton, Alberta, Canada. The goal facilitate an interdisciplinary discussion of the legal, ethical, and policy implications arising from the commercialization of genetic research. We solicited contributions for the book from authors in fields as diverse as ethics, law, medicine, health policy, and the social sciences. The papers included, while based on presentations given at the conference, have been substantially expanded and enhanced by the commentary received and discussions held at the conference.
