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.


Evaluating Human Genetic Diversity

Evaluating Human Genetic Diversity

Author: National Research Council

Publisher: National Academies Press

Published: 1998-01-19

Total Pages: 101

ISBN-13: 0309184746

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This book assesses the scientific value and merit of research on human genetic differencesâ€"including a collection of DNA samples that represents the whole of human genetic diversityâ€"and the ethical, organizational, and policy issues surrounding such research. Evaluating Human Genetic Diversity discusses the potential uses of such collection, such as providing insight into human evolution and origins and serving as a springboard for important medical research. It also addresses issues of confidentiality and individual privacy for participants in genetic diversity research studies.


Ethical Issues of Human Genetic Databases

Ethical Issues of Human Genetic Databases

Author: Bernice Elger

Publisher: Routledge

Published: 2016-05-13

Total Pages: 333

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.


Mapping and Sequencing the Human Genome

Mapping and Sequencing the Human Genome

Author: National Research Council

Publisher: National Academies Press

Published: 1988-01-01

Total Pages: 128

ISBN-13: 0309038405

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There is growing enthusiasm in the scientific community about the prospect of mapping and sequencing the human genome, a monumental project that will have far-reaching consequences for medicine, biology, technology, and other fields. But how will such an effort be organized and funded? How will we develop the new technologies that are needed? What new legal, social, and ethical questions will be raised? Mapping and Sequencing the Human Genome is a blueprint for this proposed project. The authors offer a highly readable explanation of the technical aspects of genetic mapping and sequencing, and they recommend specific interim and long-range research goals, organizational strategies, and funding levels. They also outline some of the legal and social questions that might arise and urge their early consideration by policymakers.


Human Gene Mutation

Human Gene Mutation

Author: David N. Cooper

Publisher: Taylor & Francis

Published: 1995

Total Pages: 412

ISBN-13: 9781859960554

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Within the last decade, much progress has been made in the analysis and diagnosis of human inherited disease, and in the characterization of the underlying genes and their associated pathological lesions.


Genetic Databases

Genetic Databases

Author: Oonagh Corrigan

Publisher: Routledge

Published: 2004-07-31

Total Pages: 228

ISBN-13: 1134373341

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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.


Genetic Databases

Genetic Databases

Author:

Publisher: Academic Press

Published: 1999-09-01

Total Pages: 311

ISBN-13: 008053239X

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Computer access is the only way to retrieve up-to-date sequences and this book shows researchers puzzled by the maze of URLs, sites, and searches how to use internet technology to find and analyze genetic data. The book describes the different types of databases, how to use a specific database to find a sequence that you need, and how to analyze the data to compare it with your own work. The content also covers sequence phenotype, mutation, and genetic linkage databases; simple repetitive DNA sequences; gene feature identification; and prediction of structure and function of proteins from sequence information. This book will be invaluable to those starting a career in life sciences research as well as to established researchers wishing to make full use of available resources. - Describes a wide range of databases: DNA, RNA, protein, pathways, and gene expression - Enables readers to access the information they need from databases on the web - Includes a directory of URLs for easy reference - Invaluable for those starting a career in life sciences research and also for established researchers wishing to make full use of available resources


Human Genome Informatics

Human Genome Informatics

Author: Christophe Lambert

Publisher: Academic Press

Published: 2018-08-02

Total Pages: 316

ISBN-13: 0128134313

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Human Genome Informatics: Translating Genes into Health examines the most commonly used electronic tools for translating genomic information into clinically meaningful formats. By analyzing and comparing interpretation methods of whole genome data, the book discusses the possibilities of their application in genomic and translational medicine. Topics such as electronic decision-making tools, translation algorithms, interpretation and translation of whole genome data for rare diseases are thoroughly explored. In addition, discussions of current human genome databases and the possibilities of big data in genomic medicine are presented. With an updated approach on recent techniques and current human genomic databases, the book is a valuable source for students and researchers in genome and medical informatics. It is also ideal for workers in the bioinformatics industry who are interested in recent developments in the field. - Provides an overview of the most commonly used electronic tools to translate genomic information - Brings an update on the existing human genomic databases that directly impact genome interpretation - Summarizes and comparatively analyzes interpretation methods of whole genome data and their application in genomic medicine


Cracking the Genome

Cracking the Genome

Author: Kevin Davies

Publisher: JHU Press

Published: 2002-10

Total Pages: 358

ISBN-13: 9780801871405

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This newly updated edition sheds light on the secrets of the sequence, highlighting the myriad ways in which genomics will impact human health for generations to come.


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.