This book addresses emerging questions concerning who should bear responsibility for shouldering risk, as well as the viability of existing and experimental governance mechanisms in connection with new technologies. Scholars from 14 jurisdictions unite their efforts in this edited collection to provide a comparative analysis of how various legal systems are tackling the challenges produced by the legal aspects of genetic testing in insurance and employment. They cover the diverse set of norms that surround this issue, and share insights into relevant international, regional and national incursions into the field. By doing so, the authors offer a basis for comparative reflection, including on whether transnational standard setting might be useful or necessary for the legal aspects of genetic testing as they relate to the insurance and employment contexts. The respective texts cover a broad range of topics, including the prevalence of genetic testing in the contexts of insurance and employment, and policy factors that might affect this prevalence, such as the design of national health or social insurance systems, of private insurance schemes or the availability of low-cost direct-to-consumer genetic testing. Further, the field of genetics is gaining in importance at the international and regional levels. Relevant concepts – mainly genetic tests and genetic data/information – have been internationally defined, and these definitions have influenced definitions adopted nationally. International law also recognizes a “special status” for human genetic data. The authors therefore also consider these definitions and the recognition of the special status of human genetic data within regional and national legal orders. They investigate the range of norms that specifically address the use of genetic testing in employment and insurance, encompassing international sources – including human rights norms – that may be binding or non-binding, as well national statutory, regulatory and soft-law mechanisms. Accordingly, some of the texts examine general frameworks relevant to genetic testing in each country, including those that stem from general anti-discrimination rules and norms protecting rights to autonomy, self-determination, confidentiality and privacy. In closing, the authors provide an overview of the efficiency of their respective legal regimes’ approaches – specific and generalist – to genetic testing or disclosure of genetic information in the employment or insurance contexts, including the effect of lack of legal guidance. In this regard, some of the authors highlight the need for transnational action in the field and make recommendation for future legal developments.

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.

This open access book uses a critical sociological perspective to explore contemporary ways of reformulating the governance of crime through genetics. Through the lens of scientific knowledge and genetic technology, Machado and Granja offer a unique perspective on current trends in crime governance. They explore the place and role of genetics in criminal justice systems, and show how classical and contemporary social theory can help address challenges posed by social processes and interactions generated by the uses, meanings, and expectations attributed to genetics in the governance of crime. Cutting-edge methods and research techniques are also integrated to address crucial aspects of this social reality. Finally, the authors examine new challenges emerging from recent paradigm shifts within forensic genetics, moving away from the construction of evidence as presented in court to the production of intelligence guiding criminal investigations.

A new perspective on a topical and hotly debated subject Both editors have, individually and collaboratively, written successful books for Routledge Contributors from key international academics in public health and genetics

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.

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.

As DNA forensic profiling and databasing become established as key technologies in the toolbox of the forensic sciences, their expanding use raises important issues that promise to touch everyone's lives. In an authoritative global investigation of a diverse range of countries, including those at the forefront of these technologies' development and use, this book identifies and provides critical reflection upon the many issues of privacy; distributive justice; DNA information system ownership; biosurveillance; function creep; the reliability of collection, storage and analysis of DNA profiles; the possibility of transferring medical DNA information to forensics databases; and democratic involvement and transparency in governance, an emergent key theme. This book is timely and significant in providing the essential background and discussion of the ethical, legal and societal dimensions for academics, practitioners, public interest and criminal justice organisations, and students of the life sciences, law, politics, and sociology.