The Governance Of Genetic Information
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The Governance Of Genetic Information
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Author : Heather Widdows
language : en
Publisher: Cambridge University Press
Release Date : 2009-09-03
The Governance Of Genetic Information written by Heather Widdows 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 2009-09-03 with Law categories.
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.
Designing Genetic Information Policy
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Author : United States. Congress. House. Committee on Government Operations
language : en
Publisher:
Release Date : 1992
Designing Genetic Information Policy written by United States. Congress. House. Committee on Government Operations and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 1992 with Gene mapping categories.
Genetic Governance
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Author : Robin Bunton
language : en
Publisher: Routledge
Release Date : 2005-03-18
Genetic Governance written by Robin Bunton and has been published by Routledge this book supported file pdf, txt, epub, kindle and other format this book has been release on 2005-03-18 with Social Science categories.
A new perspective on a topical and hotly debated subject Both editors have, individually and collaboratively, written successful books for Routledge Contributors from key international academics in public health and genetics
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.
Genetic Testing And The Governance Of Risk In The Contemporary Economy
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Author : Lara Khoury
language : en
Publisher: Springer Nature
Release Date : 2020-10-01
Genetic Testing And The Governance Of Risk In The Contemporary Economy written by Lara Khoury and has been published by Springer Nature this book supported file pdf, txt, epub, kindle and other format this book has been release on 2020-10-01 with Law categories.
This book addresses emerging questions concerning who should bear responsibility for shouldering risk, as well as the viability of existing and experimental governance mechanisms in connection with new technologies. Scholars from 14 jurisdictions unite their efforts in this edited collection to provide a comparative analysis of how various legal systems are tackling the challenges produced by the legal aspects of genetic testing in insurance and employment. They cover the diverse set of norms that surround this issue, and share insights into relevant international, regional and national incursions into the field. By doing so, the authors offer a basis for comparative reflection, including on whether transnational standard setting might be useful or necessary for the legal aspects of genetic testing as they relate to the insurance and employment contexts. The respective texts cover a broad range of topics, including the prevalence of genetic testing in the contexts of insurance and employment, and policy factors that might affect this prevalence, such as the design of national health or social insurance systems, of private insurance schemes or the availability of low-cost direct-to-consumer genetic testing. Further, the field of genetics is gaining in importance at the international and regional levels. Relevant concepts – mainly genetic tests and genetic data/information – have been internationally defined, and these definitions have influenced definitions adopted nationally. International law also recognizes a “special status” for human genetic data. The authors therefore also consider these definitions and the recognition of the special status of human genetic data within regional and national legal orders. They investigate the range of norms that specifically address the use of genetic testing in employment and insurance, encompassing international sources – including human rights norms – that may be binding or non-binding, as well national statutory, regulatory and soft-law mechanisms. Accordingly, some of the texts examine general frameworks relevant to genetic testing in each country, including those that stem from general anti-discrimination rules and norms protecting rights to autonomy, self-determination, confidentiality and privacy. In closing, the authors provide an overview of the efficiency of their respective legal regimes’ approaches – specific and generalist – to genetic testing or disclosure of genetic information in the employment or insurance contexts, including the effect of lack of legal guidance. In this regard, some of the authors highlight the need for transnational action in the field and make recommendation for future legal developments.
Designing Genetic Information Policy
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Author : United States. Congress. House. Committee on Government Operations
language : en
Publisher:
Release Date : 1992
Designing Genetic Information Policy written by United States. Congress. House. Committee on Government Operations and has been published by this book supported file pdf, txt, epub, kindle and other format this book has been release on 1992 with Human gene mapping categories.
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.
Privacy Issues In Biomedical And Clinical Research
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Author : National Research Council
language : en
Publisher: National Academies Press
Release Date : 1998-12-10
Privacy Issues In Biomedical And Clinical Research written by National Research Council and has been published by National Academies Press this book supported file pdf, txt, epub, kindle and other format this book has been release on 1998-12-10 with Medical categories.
After discussions with the National Cancer Institute and the Department of Energy the Board on Biology of the National Research Council agreed to run a workshop under the auspices of its Forum on Biotechnology entitled "Privacy Issues in Biomedical and Clinical Research" on November 1, 1997. The organizers want to stress the forum was not intended to cover the full gauntlet of issues concerning Genomics and the Privacy of Medical Records. The emphasis of this forum was to look at pending legislation in Congress (Fall, 1997) and consider, if enacted as written, how this would affect genetic research. The broad language of this legislation written to protect the individual could inadvertently restrict research intended to help these same individuals. Scientific progress requires the sharing of information for the validation of results and the dissemination of gained knowledge to be effective. Other issues which were touched upon in this forum but not fully explored include; the trust of individuals involved in genetic studies in the manner their genetic information could be used, the practice of the generalized "linking" of particular ethnic groups with specific genetic traits, and the potential for positive and negative impact on the quality of life by having knowledge of one's genetic potential. These and other issues which have come upon us in the age of genomics require separate, focused efforts to explore their potential effect on society.
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.
The Connected Self
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Author : Heather Widdows
language : en
Publisher: Cambridge University Press
Release Date : 2013-01-17
The Connected Self written by Heather Widdows 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 2013-01-17 with Law categories.
Heather Widdows suggests new ethical frameworks for genetic governance, to replace those that offer little protection and permit significant injustice.