With interdisciplinary chapters written by lawyers, sociologists, doctors and biobank practitioners, Global Genes, Local Concerns identifies and discusses the most pressing issues in contemporary biobanking. Addressing pressing questions such as how do national biobanks best contribute to translational research and how could academic and industrial exploitation, ownership and IPR issues be addressed and facilitated, this book contributes to the continued development of international biobanking by highlighting and analysing the complexities in this important area of research.
Governing Intellectual Property Rights Within Publicly Funded Biobanks R. Neethu The boom in biobanks and health databases as research infrastructures have evoked various legal and ethical debates. Since then numerous new developments have emerged such as digitalization, big-data research and artificial intelligence which has important implications for biobank-based research and collaborations. This new paradigm offers new legal challenges for commercial involvement particularly within a publicly funded setting. In this innovative book, the author shows that securing maximum social benefit out of the knowledge emanating from the use of biobank resources lies in managing intellectual property inputs and outputs effectively in keeping with the values core to such research. Focusing on the challenges of involving intellectual property rights (IPRs) particularly in the precompetitive phase of biobank-based research, the book offers an extensive understanding of the role of different IPRs and identifies the gaps in the law and its implications for biobanks. The analysis covers important aspects in relation to biobanks such as: Digital integration and biomedical data storage; Ownership of biological samples; Commercialization and benefit sharing; Partnership models; Public sector research; Disposition of samples; Consent; Cross-border exchange; Trade secrecy; Privacy; Regulatory stewardship; Business strategies; Ethical considerations over biological resources; Patenting of inventions relating to personalized medicine; Ethical parameters within patent law; and Rights regarding genetic data and databases. The book includes observations, case studies and interviews conducted by the author. In conclusion, the author offers cogent recommendations for legal interoperability of IP rules and research practices designed to enhance the ability of biobanks to share, access and reuse data. This book is the first of its kind to explore the organizational and legislative choices for biobanks particularly while engaging in the protection of research results and technology transfer within a publicly funded setting. It will be of substantial interest to all stakeholders in biobanking, especially policymakers, biobankers and researchers working in the field of health law as well as for legal practitioners, academics and patient interest groups.
This anchor volume to the series Managing Global Genetic Resources examines the structure that underlies efforts to preserve genetic material, including the worldwide network of genetic collections; the role of biotechnology; and a host of issues that surround management and use. Among the topics explored are in situ versus ex situ conservation, management of very large collections of genetic material, problems of quarantine, the controversy over ownership or copyright of genetic material, and more.
Genome Finland tells a story of genomic medicine in Finland from the study of rare Finnish diseases in the 1960s and 1970s to the implementation of personalized medicine in the 2020s. The main focus is on the 21st century – the period after the Human Genome Project – and on the establishment of new infrastructures to support genomic medicine, such as biobanks. The book opens up the reasoning and discussions as well as the settings and events through which Finnish medical genetics reached the top level of international biomedicine in the late 1990s, biobanks and biobank research evolved during the 2000s and 2010s, and large transnational public-private partnership projects utilising massive amounts of genome and patient data started to dominate also Finnish research into the 2020s. In particular, Genome Finland examines and exposes the connections between biomedical science, ‘knowledge-based’ economy and business, and innovation policy in Finland during the past decades.
While the history of philosophy has traditionally given scant attention to food and the ethics of eating, in the last few decades the subject of food ethics has emerged as a major topic, encompassing a wide array of issues, including labor justice, public health, social inequity, animal rights and environmental ethics. This handbook provides a much needed philosophical analysis of the ethical implications of the need to eat and the role that food plays in social, cultural and political life. Unlike other books on the topic, this text integrates traditional approaches to the subject with cutting edge research in order to set a new agenda for philosophical discussions of food ethics. The Routledge Handbook of Food Ethics is an outstanding reference source to the key topics, problems and debates in this exciting subject and is the first collection of its kind. Comprising over 35 chapters by a team of international contributors, the Handbook is divided into 7 parts: the phenomenology of food gender and food food and cultural diversity liberty, choice and food policy food and the environment farming and eating other animals food justice Essential reading for students and researchers in food ethics, it is also an invaluable resource for those in related disciplines such as environmental ethics and bioethics.
"The relevance of intellectual property (IP) law has increased dramatically over the last several years. Globalization, digitization, and the rise of post-industrial information-based industries have all contributed to a new prominence of IP law as one of the most important factors in driving innovation and economic development. At the same time, the significant expansion of IP rules has impacted many areas of public policy such as public health, the environment, biodiversity, agriculture, information, in an unprecedented manner. The growing importance of IP law has led to an exponential growth of academic research in this area. This Book offers a comprehensive overview of the methods and approaches that can be used to address and develop scholarly research questions related to IP law. In particular, this Book aims to provide a useful resource that can be used by IP scholars who are interested in expanding their expertise in a specific research method or seek to acquire an understanding of alternative lenses that could be applied to their research. Even though this Book does not claim to include all existing research methodologies, it represents one of the largest and most diverse compilations, which has been carried out to date. In addition, the authors of this Book comprise an equally diverse group of scholars from different jurisdictions, backgrounds, and legal traditions. This diversity, both regarding the topics and the authors, is a fundamental feature of the Book, which seeks to assist IP scholars worldwide in their research journeys." --
Part I Setting the scene -- Introduction: Individual rights, the public interest and biobank research 4000 (8) -- Genetic data and privacy protection -- Part II GDPR and European responses -- Biobank governance and the impact of the GDPR on the regulation of biobank research -- Controller' and processor's responsibilities in biobank research under GDPR -- Individual rights in biobank research under GDPR -- Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research -- A Pan-European analysis of Article 89 implementation and national biobank research regulations -- EEA, Switzerland analysis of GDPR requirements and national biobank research regulations -- Part III National insights in biobank regulatory frameworks -- Selected 10-15 countries for reports: Germany -- Greece -- France -- Finland -- Sweden -- United Kingdom -- Part IV Conclusions -- Reflections on individual rights, the public interest and biobank research, ramifications and ways forward. .
This incisive book explores the ways in which the major notions of fairness, morality and ordre public can be used both to justify and to limit intellectual property rights. Written by an international team of experts in the field, it provides varied and sometimes divergent perspectives on how these notions are applied to different rights and in different contexts.
This book explores the current state of Corporate Social Responsibility (CSR) in 24 European nations, examining the state of the development and practice of CSR and sustainability for organizations in these countries. The common denominator for all of the book’s 25 chapters is a management perspective rather than an ethical discourse. The book therefore represents a comprehensive survey of initiatives and activities in the field of CSR and provides a wealth of complete cases and examples for different approaches to sustainable and responsible management practice. The book also reviews the relevant political and governmental guidelines and frameworks for organizations, both on a national and a European level. Europe has taken a leading role in the promotion and implementation of CSR. This book showcases how, through CSR, enterprises can significantly contribute to achieving the European Union’s treaty objectives of sustainable development and a highly competitive social market economy.
When data from all aspects of our lives can be relevant to our health - from our habits at the grocery store and our Google searches to our FitBit data and our medical records - can we really differentiate between big data and health big data? Will health big data be used for good, such as to improve drug safety, or ill, as in insurance discrimination? Will it disrupt health care (and the health care system) as we know it? Will it be possible to protect our health privacy? What barriers will there be to collecting and utilizing health big data? What role should law play, and what ethical concerns may arise? This timely, groundbreaking volume explores these questions and more from a variety of perspectives, examining how law promotes or discourages the use of big data in the health care sphere, and also what we can learn from other sectors.
