The International Legal Governance of the Human Genome

The International Legal Governance of the Human Genome

Author: Chamundeeswari Kuppuswamy

Publisher: Routledge

Published: 2009-06-09

Total Pages: 261

ISBN-13: 1134047428

DOWNLOAD EBOOK

The human genome is a well known symbol of scientific and technological progress in the twenty-first century. However, concerns about the exacerbation of inequalities between the rich and the poor, the developing and the developed states, the healthy and the unhealthy are causing problems for the progress of scientific research. The international community is moving towards a human rights approach in addressing these concerns. Such an approach will be piecemeal and ineffective so long as fundamental issues about economic, social and cultural rights, the so-called second generation of human rights, are not addressed. This book argues that, in order to be able to meaningfully apply a human rights framework to the governance of the human genome, the international human rights framework should be based on a unified theory of human rights where the distinction between positive and negative rights is set aside. The book constructs a common heritage concept with the right to development at its core and explores the content of the right to development through rational human rights theory. It is argued that the notion of property rights in the human genome should be placed within the context of protecting human rights, including the right to development. The concept of common heritage of humanity, contrary to the widely held belief that it is in opposition to patenting of gene sequences, supports human rights-based conceptions of property rights. This book fills a gap in the literature on international legal governance of the human genome will provide an essential reference point for research into the right to development, development issues in bioethics, the role of international institutions in law making and research governance.


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

DOWNLOAD EBOOK

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.


The International Legal Governance of the Human Genome

The International Legal Governance of the Human Genome

Author: Chamundeeswari Kuppuswamy

Publisher: Routledge

Published: 2009-06-09

Total Pages: 225

ISBN-13: 1134047436

DOWNLOAD EBOOK

This book explores international governance of the human genome from a human rights perspective and challenges paradigms of property that are entrenched in relevant international instruments.


Human Genes and Neoliberal Governance

Human Genes and Neoliberal Governance

Author: Antoinette Rouvroy

Publisher: Routledge

Published: 2007-12-13

Total Pages: 540

ISBN-13: 1134066678

DOWNLOAD EBOOK

Original and interdisciplinary, this is the first book to explore the relationship between a neoliberal mode of governance and the so-called genetic revolution. Looking at the knowledge-power relations in the post-genomic era and addressing the pressing issues of genetic privacy and discrimination in the context of neoliberal governance, this book demonstrates and explains the mechanisms of mutual production between biotechnology and cultural, political, economic and legal frameworks. In the first part Antoinette Rouvroy explores the social, political and economic conditions and consequences of this new ‘perceptual regime’. In the second she pursues her analysis through a consideration of the impact of ‘geneticization’ on political support of the welfare state and on the operation of private health and life insurances. Genetics and neoliberalism, she argues, are complicit in fostering the belief that social and economic patterns have a fixed nature beyond the reach of democratic deliberation, whilst the characteristics of individuals are unusually plastic, and within the scope of individual choice and responsibility. This book will be of interest to all students of law, sociology and politics.


The Governance of Genetic Information

The Governance of Genetic Information

Author: Heather Widdows

Publisher: Cambridge University Press

Published: 2009-09-03

Total Pages: 249

ISBN-13: 1139479644

DOWNLOAD EBOOK

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.


Heritable Human Genome Editing

Heritable Human Genome Editing

Author: The Royal Society

Publisher: National Academies Press

Published: 2021-01-16

Total Pages: 239

ISBN-13: 0309671132

DOWNLOAD EBOOK

Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing. From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.


Between Moral Hazard and Legal Uncertainty

Between Moral Hazard and Legal Uncertainty

Author: Matthias Braun

Publisher: Springer

Published: 2018-11-15

Total Pages: 225

ISBN-13: 3658226609

DOWNLOAD EBOOK

Genome Editing Techniques are seen to be at the frontier of current research in the field of emerging biotechnologies. The latest revolutionary development, the so-called CRISPR technology, represents a paradigmatic example of the ambiguity of such techniques and has resulted in an international interdisciplinary debate on whether or not it is necessary to ban the application of this technique by means of a moratorium on its use for human germline modifications, particularly in human embryos in the reproduction process. However, given that other germline engineering techniques like mitochondrial (mt) DNA transfer techniques are already permitted and applied, the question arises what lies at the root of the apparent social unease about the modification of the human germline by Genome Editing Techniques like CRISPR. Against this background, the book seeks to make a substantial contribution to the current debate about a responsible and participatory framework for research on emerging biotechnologies by analysing underlying perceptions, attitudes, arguments and the reasoning on Genome Editing Techniques.


Human DNA

Human DNA

Author: Bartha Maria Knoppers

Publisher: Martinus Nijhoff Publishers

Published: 1997-07-30

Total Pages: 486

ISBN-13: 9789041103611

DOWNLOAD EBOOK

"Human DNA: Law and Policy" provides the first international debate on a topic of universal concern. No book has brought together such a diverse range of multidisciplinary ethical and legal expertise on the highly controversial issues surrounding the use, storage, exchange and sale of the very stuff' of which we are made - human genetic material. Testing of human genetic material involves a variety of samples (pathological samples, newborn screening samples, samples leftover' after testing, and research samples), shared around the world. This places consent issues on an individual, familial, and societal level. The comparative and international perspectives presented reveal the transnational nature of genetic studies. This book focuses on the issues of DNA sampling and testing, consent and confidentiality, banking policies, genetic epidemiology and diversity. Since financial and technological pressures are inextricably linked to human genetics research, commercialization and patents are also examined. Academic researchers, policy makers and industry will benefit from the learned papers and reports of the discussion, which is rich in diversity of opinion, controversial in the diversity of policy and approaches presented, anchored on scientific facts and yet sensitive to cultural, political and economic differences.


Creation and Governance of Human Genetic Research Databases

Creation and Governance of Human Genetic Research Databases

Author: OECD

Publisher: OECD Publishing

Published: 2006-11-13

Total Pages: 168

ISBN-13:

DOWNLOAD EBOOK

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.