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Creation and Governance of Human Genetic Research Databases

Creation and Governance of Human Genetic Research Databases PDF Author: OECD
Publisher: OECD Publishing
ISBN: 9264028536
Category :
Languages : en
Pages : 160

Book Description
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.

Creation and Governance of Human Genetic Research Databases

Creation and Governance of Human Genetic Research Databases PDF Author: OECD
Publisher: OECD Publishing
ISBN: 9264028536
Category :
Languages : en
Pages : 160

Book Description
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 PDF Author: Matti Häyry
Publisher: Cambridge University Press
ISBN: 1139464043
Category : Law
Languages : en
Pages : 20

Book Description
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.

Intellectual Property and Emerging Technologies

Intellectual Property and Emerging Technologies PDF Author: Matthew Rimmer
Publisher: Edward Elgar Publishing
ISBN: 1781001189
Category : Technology & Engineering
Languages : en
Pages : 499

Book Description
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.

Human Genome Epidemiology, 2nd Edition

Human Genome Epidemiology, 2nd Edition PDF Author: Muin Khoury
Publisher: Oxford University Press
ISBN: 0195398440
Category : Medical
Languages : en
Pages : 701

Book Description
This text describes the role that epidemiologic methods play in the continuum from gene discovery to the development and application of genetic tests. It provides a foundation that should help researchers, policy makers and practitioners integrate genomics into medical and public health practice.

Human Genome Epidemiology, 2nd Edition

Human Genome Epidemiology, 2nd Edition PDF Author: Muin Khoury
Publisher: Oxford University Press
ISBN: 9780199749348
Category : Medical
Languages : en
Pages : 704

Book Description
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.

Genetic Databases

Genetic Databases PDF Author: Oonagh Corrigan
Publisher: Psychology Press
ISBN: 9780415316804
Category : Amino acid sequence
Languages : en
Pages : 228

Book Description
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.

Populations and Genetics

Populations and Genetics PDF Author: Bartha Maria Knoppers
Publisher: BRILL
ISBN: 9047402936
Category : Law
Languages : en
Pages : 668

Book Description
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.

The Ethics and Governance of Human Genetic Databases

The Ethics and Governance of Human Genetic Databases PDF Author:
Publisher:
ISBN: 9780511285721
Category : Human genetics
Languages : en
Pages : 283

Book Description
Bioethics scholars examine the ethical, legal and social questions raised by human genetic databases.

La protection des données médicales

La protection des données médicales PDF Author: Deryck Beyleveld
Publisher: Anthemis
ISBN: 2874551228
Category : Data protection
Languages : en
Pages : 220

Book Description


Debating Human Genetics

Debating Human Genetics PDF Author: Alexandra Plows
Publisher: Routledge
ISBN: 1134057865
Category : Medical
Languages : en
Pages : 243

Book Description
Debating Human Genetics examines contemporary public debate on emerging developments in medical genetics, including cloning, gene therapy, gene patenting, biobanks, genetic testing and screening, and pharmacogenomics.