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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.
Many cancers, both common and rare, are known to have a hereditary predisposition and advances in genetics have clarified the risks and in some cases the mechanisms of cancer developing in an individual. First published in 1998, this important contribution to the literature of cancer genetics covers all the key issues, reviewing both the technology behind genetic risk assessment and the ethical dilemmas it poses. It is divided into two parts. The first deals with ethical, legal and social issues. The second systematically outlines current knowledge of the inheritance patterns of many different cancer types, both from a site-by-site perspective and for special groups. This authoritative volume will be of interest to oncologists, physicians and surgeons in other specialities and to health professionals in the areas of primary care, counselling and cancer risk assessment.
First published in 1966, Thompson and Thompson Genetics and Genomics in Medicine has become an essential textbook for medical students, genetic counseling students, students in laboratory medicine, and more advanced trainees. With its focus on fundamental principles in human genetics and genomics and their application to medicine, the book has served many as a well-thumbed resource they return to over and over. Such students can continue to depend on this valuable text, joining those in newer fields of genome data analysis for all they need to know about genetics and genomics throughout their basic science training, clinical placements and beyond. Coverage includes new discoveries—such as ...
Population genomics research drawing on genetic databases has expanded rapidly, with some of this information being combined in 'biobanks'. Managing this information in an appropriate way is a highly complex ethical issue in the health policy arena. This book combines theoretical and empirical research to analyze the areas of conflict and consensus in the regulatory and ethical frameworks that have been developed to govern biobanks. Ethicists from the Department of Ethics, Trade, Human Rights and Health Law (ETH) of the World Health Organization, the Institute of Biomedical Ethics of Geneva University and the Institute of Biomedical Ethics of the University of Zurich, with the support of the...
This volume elaborates on the research and clinical implications of the hereditary and molecular basis of childhood cancers. The focus of the ‘disease-related’ chapters of the book is to integrate what is known about the molecular basis of that particular clinical entity (or group of related entities) with the clinical manifestations, to relate the relationship of the molecular oncologic pathways with relevant developmental or non-human species biology in order to better understand the complexity of these systems. The resulting clinical implications of understanding this biology are elaborated on. Chapters 13-16 discuss the broader psychosocial, ethical and genetic counseling issues that arise and that are so critical to translating the knowledge gained from advances in molecular genetics into the clinic. Chapter 12 in particular provides a unique perspective of the application of this knowledge in less-developed nations where ‘modern’ technologies may not be readily available, but where the clinical manifestations of these disorders are prevalent.
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.
How does the law of the European Union affect health law and policy? At first sight, it seems limited. However, despite its restricted formal competence, the EU has recently become increasingly involved in the health field. Litigation based on EU law has resulted in a 'right to receive health care services' across national boundaries which may have huge practical implications for national health systems. The EU has promulgated legislation regulating clinical research, and the marketing of pharmaceuticals; patients' rights are affected by EU legislation on data protection and product liability; the qualifications of health care professionals are legally recognised across the EU; and the EU has acted to promote public health. This book explores the various impacts of measures of EU law on national health law and policy. Through elaboration of selected examples, the authors show that, within the EU, health law cannot be regarded as a purely national affair.
A survey of the regulation of human germline genome modification in eighteen countries and the emerging international standards.
Many people need help planning for retirement, saving, investing, and decumulating their assets, yet financial advice is often complex, potentially conflicted, and expensive. The advent of computerized financial advice offers huge promise to make accessible a more coherent approach to financial management, one that takes into account not only clients' financial assets but also human capital, home values, and retirement pensions. Robo-advisors, or automated on-line services that use computer algorithms to provide financial advice and manage customers' investment portfolios, have the potential to transform retirement systems and peoples' approach to retirement planning. This volume offers cutting-edge research and recommendations regarding the impact of financial technology, or FinTech, to disrupt retirement planning and retirement system design.
This book provides an analysis of the ways in which the BAC has established an ethical framework for biomedical research in Singapore, following the launch of the Biomedical Sciences Initiative by the Singapore Government. The editors and authors have an intimate knowledge of the working of the BAC, and the focus of the book includes the ways in which international forces have influenced the form and substance of bioethics in Singapore. Together, the authors offer a comparative account of the institutionalisation of biomedical research ethics in Singapore, considered in the wider context of international regulatory efforts. The book reviews the work of the BAC by placing it within the broade...