Creation and Governance of Human Genetic Research Databases

Creation and Governance of Human Genetic Research Databases
Author: OECD
Publisher: OECD Publishing
Total Pages: 156
Release: 2006-10-25
Genre:
ISBN: 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.

Governing Genetic Databases

Governing Genetic Databases
Author: Susan Gibbons
Publisher:
Total Pages: 0
Release: 2014
Genre:
ISBN:

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This paper reports on the initial findings of an interdisciplinary research project on the governance of human genetic databases in England and Wales. The number of biosample and information collections has expanded, yet considerable legal uncertainty surrounds their definition, collection, storage, management, and use which could inhibit research and clinical practice, while failing to protect the rights and interests of all stakeholders. We report some initial findings from the legal research and identify major challenges associated with defining genetic databases. We identify a wide range of relevant instruments and regulatory actors, and suggest that none adequately addresses the challenges posed by contemporary research techniques or the 'corporeal' and 'informational' materials used in the 'genetic databases' context. This preliminary analysis seriously questions the efficacy of the current regulatory framework and concludes that developing an appropriate governance framework for the creation, maintenance, and use of genetic databases requires the bringing together of legal analysis with good quality empirical evidence.

Intellectual Property and Emerging Technologies

Intellectual Property and Emerging Technologies
Author: Matthew Rimmer
Publisher: Edward Elgar Publishing
Total Pages: 499
Release: 2012-01-01
Genre: Technology & Engineering
ISBN: 1781001189

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This unique and comprehensive collection investigates the challenges posed to intellectual property by recent paradigm shifts in biology. It explores the legal ramifications of emerging technologies, such as genomics, synthetic biology, stem cell research, nanotechnology, and biodiscovery. Extensive contributions examine recent controversial court decisions in patent law such as Bilski v. Kappos, and the litigation over Myriad's patents in respect of BRCA1 and BRCA2 while other papers explore sui generis fields, such as access to genetic resources, plant breeders' rights, and traditional knowledge. The collection considers the potential and the risks of the new biology for global challenges such as access to health-care, the protection of the environment and biodiversity, climate change, and food security. It also considers Big Science projects such as biobanks, the 1000 Genomes Project, and the Doomsday Vault. The inter-disciplinary research brings together the work of scholars from Australia, Canada, Europe, the UK and the US and involves not only legal analysis of case law and policy developments, but also historical, comparative, sociological, and ethical methodologies. Intellectual Property and Emerging Technologies will appeal to policy-makers, legal practitioners, business managers, inventors, scientists and researchers.

Genetic Databases

Genetic Databases
Author: Oonagh Corrigan
Publisher: Routledge
Total Pages: 225
Release: 2004-07-31
Genre: Computers
ISBN: 113437335X

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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.

Human Genome Epidemiology, 2nd Edition

Human Genome Epidemiology, 2nd Edition
Author: Muin J. Khoury
Publisher: Oxford University Press
Total Pages: 701
Release: 2010-01-20
Genre: Medical
ISBN: 0195398440

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The first edition of Human Genome Epidemiology, published in 2004, discussed how the epidemiologic approach provides an important scientific foundation for studying the continuum from gene discovery to the development, applications and evaluation of human genome information in improving health and preventing disease. Since that time, advances in human genomics have continued to occur at a breathtaking pace.With contributions from leaders in the field from around the world, this new edition is a fully updated look at the ways in which genetic factors in common diseases are studied. Methodologic developments in collection, analysis and synthesis of data, as well as issues surrounding specific applications of human genomic information for medicine and public health are all discussed. In addition, the book focuses on practical applications of human genome variation in clinical practice and disease prevention. Students, clinicians, public health professionals and policy makers will find the book a useful tool for understanding the rapidly evolving methods of the discovery and use of genetic information in medicine and public health in the 21st century.

Human Genome Epidemiology, 2nd Edition

Human Genome Epidemiology, 2nd Edition
Author: Muin Khoury
Publisher: Oxford University Press
Total Pages: 701
Release: 2010-01-20
Genre: Medical
ISBN: 0199749345

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The first edition of Human Genome Epidemiology, published in 2004, discussed how the epidemiologic approach provides an important scientific foundation for studying the continuum from gene discovery to the development, applications and evaluation of human genome information in improving health and preventing disease. Since that time, advances in human genomics have continued to occur at a breathtaking pace. With contributions from leaders in the field from around the world, this new edition is a fully updated look at the ways in which genetic factors in common diseases are studied. Methodologic developments in collection, analysis and synthesis of data, as well as issues surrounding specific applications of human genomic information for medicine and public health are all discussed. In addition, the book focuses on practical applications of human genome variation in clinical practice and disease prevention. Students, clinicians, public health professionals and policy makers will find the book a useful tool for understanding the rapidly evolving methods of the discovery and use of genetic information in medicine and public health in the 21st century.

The Ethics and Governance of Human Genetic Databases

The Ethics and Governance of Human Genetic Databases
Author:
Publisher:
Total Pages: 283
Release: 2007
Genre: Human genetics
ISBN: 9780511285721

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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
Total Pages: 668
Release: 2003-12-01
Genre: Law
ISBN: 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.

Human Genome Editing

Human Genome Editing
Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
Total Pages: 329
Release: 2017-08-13
Genre: Medical
ISBN: 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.

La protection des données médicales

La protection des données médicales
Author: Deryck Beyleveld
Publisher: Anthemis
Total Pages: 220
Release: 2008
Genre: Data protection
ISBN: 2874551228

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