The Ethics and Governance of Human Genetic Databases

The Ethics and Governance of Human Genetic Databases

Author: Matti Häyry

Publisher: Cambridge University Press

Published: 2007-04-19

Total Pages: 20

ISBN-13: 1139464043

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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 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.

Creation and Governance of Human Genetic Research Databases

Creation and Governance of Human Genetic Research Databases

Author: OECD

Publisher: OECD Publishing

Published: 2006-10-25

Total Pages: 156

ISBN-13: 9264028536

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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 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 156 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.

The Ethics and Governance of Human Genetic Databases

The Ethics and Governance of Human Genetic Databases

Author:

Publisher:

Published: 2007

Total Pages: 283

ISBN-13: 9780511285721

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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 :

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.

The Ethics and Governance of Human Genetic Databases

The Ethics and Governance of Human Genetic Databases

Author: Matti Häyry

Publisher:

Published: 2014-05-14

Total Pages: 297

ISBN-13: 9780511286469

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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.

Populations and Genetics

Populations and Genetics

Author: Bartha Maria Knoppers

Publisher: BRILL

Published: 2003-12-01

Total Pages: 668

ISBN-13: 9047402936

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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 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.

Ethical Issues of Human Genetic Databases

Ethical Issues of Human Genetic Databases

Author: Bernice Elger

Publisher: Routledge

Published: 2016-05-13

Total Pages: 332

ISBN-13: 1317141466

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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.


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.

Human Genome Editing

Human Genome Editing

Author: National Academies of Sciences, Engineering, and Medicine

Publisher: National Academies Press

Published: 2017-08-13

Total Pages: 329

ISBN-13: 0309452880

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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 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.

Genetic Databases

Genetic Databases

Author: Oonagh Corrigan

Publisher: Psychology Press

Published: 2004

Total Pages: 228

ISBN-13: 9780415316804

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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 Genetic Databases by : Oonagh Corrigan

Download or read book Genetic Databases written by Oonagh Corrigan and published by Psychology Press. This book was released on 2004 with total page 228 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.

Principles and Practice in Biobank Governance

Principles and Practice in Biobank Governance

Author: Mark Stranger

Publisher: Routledge

Published: 2016-04-15

Total Pages: 316

ISBN-13: 1317075870

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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 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.

Genetic Governance

Genetic Governance

Author: Robin Bunton

Publisher: Psychology Press

Published: 2005

Total Pages: 236

ISBN-13: 9780415354066

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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.


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 236 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.