The Ethics And Governance Of Human Genetic Databases
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The Ethics And Governance Of Human Genetic Databases
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Author : Matti Häyry
language : en
Publisher: Cambridge University Press
Release Date : 2007-04-19
The Ethics And Governance Of Human Genetic Databases written by Matti Häyry and has been published by Cambridge University Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2007-04-19 with Law categories.
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.
Creation And Governance Of Human Genetic Research Databases
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Author : OECD
language : en
Publisher: OECD Publishing
Release Date : 2006-10-25
Creation And Governance Of Human Genetic Research Databases written by OECD and has been published by OECD Publishing this book supported file pdf, txt, epub, kindle and other format this book has been release on 2006-10-25 with categories.
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.
The Ethics And Governance Of Human Genetic Databases
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Author :
language : en
Publisher:
Release Date : 2007
The Ethics And Governance Of Human Genetic Databases written by and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2007 with Human genetics categories.
Bioethics scholars examine the ethical, legal and social questions raised by human genetic databases.
The Ethics And Governance Of Human Genetic Databases
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Author : Matti Häyry
language : en
Publisher:
Release Date : 2014-05-14
The Ethics And Governance Of Human Genetic Databases written by Matti Häyry and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 2014-05-14 with Human genetics categories.
Bioethics scholars examine the ethical, legal and social questions raised by human genetic databases.
Populations And Genetics
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Author : Bartha Maria Knoppers
language : en
Publisher: BRILL
Release Date : 2003-12-01
Populations And Genetics written by Bartha Maria Knoppers and has been published by BRILL this book supported file pdf, txt, epub, kindle and other format this book has been release on 2003-12-01 with Law categories.
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.
Ethical Issues Of Human Genetic Databases
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Author : Bernice Elger
language : en
Publisher: Routledge
Release Date : 2016-05-13
Ethical Issues Of Human Genetic Databases written by Bernice Elger and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2016-05-13 with Law categories.
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.
Principles And Practice In Biobank Governance
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Author : Mark Stranger
language : en
Publisher: Routledge
Release Date : 2016-04-15
Principles And Practice In Biobank Governance written by Mark Stranger and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2016-04-15 with Social Science categories.
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.
Human Genetic Biobanks In Asia
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Author : Margaret Sleeboom-Faulkner
language : en
Publisher: Routledge
Release Date : 2008-11-19
Human Genetic Biobanks In Asia written by Margaret Sleeboom-Faulkner and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2008-11-19 with Business & Economics categories.
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.
Biobanks
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Author : Herbert Gottweis
language : en
Publisher: Routledge
Release Date : 2008-04-28
Biobanks written by Herbert Gottweis and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2008-04-28 with Science categories.
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.
Genetic Databases
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Author : Oonagh Corrigan
language : en
Publisher: Psychology Press
Release Date : 2004
Genetic Databases written by Oonagh Corrigan and has been published by Psychology Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2004 with Amino acid sequence categories.
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.