Ethical Issues Of Human Genetic Databases
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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.
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.
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.
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 In Governing Biobanks
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Author : Nikola Biller-Andorno
language : en
Publisher: Routledge
Release Date : 2016-05-13
Ethical Issues In Governing Biobanks written by Nikola Biller-Andorno 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 Science categories.
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.
Society And Genetic Information
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Author : Judit S ndor
language : en
Publisher: Central European University Press
Release Date : 2003-01-01
Society And Genetic Information written by Judit S ndor and has been published by Central European University Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 2003-01-01 with Religion categories.
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.
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 : 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.
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.