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Ethics, Law and Governance of Biobanking
Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the borders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and ethical frameworks. Then how do we regulate it? This book contains an overview of the existing regulatory landscape for biobank research in t...
Research Handbook on EU Data Protection Law
Bringing together leading European scholars, this thought-provoking Research Handbook provides a state-of-the-art overview of the scope of research and current thinking in the area of European data protection. Offering critical insights on prominent strands of research, it examines key challenges and potential solutions in the field. Chapters explore the fundamental right to personal data protection, government-to-business data sharing, data protection as performance-based regulation, privacy and marketing in data-driven business models, data protection and judicial automation, and the role of consent in an algorithmic society.
Getting to Good
This book represents the first comprehensive, gold standard reader on research integrity in the biomedical sciences. Now more than ever, the responsible conduct of research (RCR) has become critically important as new technologies affect research practices in both positive and negative ways. Since learning to do science and practicing it brings researchers into contact with a vast array of ethical issues, it is critical to know the standards and how they are evolving. Indeed, research integrity requires scientists at all levels to operate ethically in a system that supports ethical practice. This unique, foundational text covers all the relevant areas -- subject protection, research miscondu...
Promoting the “Human” in Law, Policy, and Medicine
Professor Bartha Maria Knoppers stepped down from the Canada Research Chair in Law and Medicine at McGill University in April 2024, a post she held for more than 20 years. Professor Knoppers consistently prioritized “humanity” in her academic work and in policymaking. As such, she forged a strong intellectual legacy, notably through her work on the human right to science, genomic and health-related data sharing, genome editing, human reproductive technologies, stem cell research, the rights of children, and population health. This collection of essays honours her extraordinary academic contributions to law, policy, and medicine.
The European Health Data Space
This timely volume provides a comprehensive examination of how the proposed new European Health Data Space (EHDS) legislation will impact upon health and genetic data, individual privacy and providers of health services. With the current legal framework recognised as insufficient in protecting data-related rights, the book spotlights the opportunities and challenges posed by the EHDS in balancing the interests of individuals with policymakers and researchers. It considers the impact on individual EU member states while highlighting issues such as changes to patients’ rights, wearable technology, developments in e-health and the secondary use of medical data. Critically, it also examines ho...
Deep Diving into Data Protection
This book celebrates the 40th anniversary of the creation of the CRID and the 10th anniversary of its successor, the CRIDS. It gathers twenty-one very high quality contributions on extremely interesting and topical aspects of data protection. The authors come from Europe as well as from the United States of America and Canada. Their contributions have been grouped as follows: 1° ICT Governance; 2° Commodification & Competition; 3° Secret surveillance; 4° Whistleblowing; 5° Social Medias, Web Archiving & Journalism; 6° Automated individual decision-making; 7° Data Security; 8° Privacy by design; 9° Health, AI, Scientific Research & Post-Mortem Privacy. This book is intended for all academics, researchers, students and practitioners who have an interest in privacy and data protection.
Confidentiality, Privacy, and Data Protection in Biomedicine
Featuring contributions from leading scholars of health privacy law, this important volume offers insightful reflection on issues such as confidentiality, privacy, and data protection, as well as analysis in how a range of jurisdictions—including the US, the UK, Europe, South Africa, and Australia—navigate a rapidly developing biomedical environment. While the collection of personal health information offers the potential to drive research and innovation, it also generates complex legal and ethical questions in how this information is used to ensure the rights and interests of individuals and communities are respected. But in many ways laws have struggled to keep pace with technological ...
Sustaining Surveillance: The Importance of Information for Public Health
This book presents a comprehensive theory of the ethics and political philosophy of public health surveillance based on reciprocal obligations among surveillers, those under surveillance, and others potentially affected by surveillance practices. Public health surveillance aims to identify emerging health trends, population health trends, treatment efficacy, and methods of health promotion--all apparently laudatory goals. Nonetheless, as with anti-terrorism surveillance, public health surveillance raises complex questions about privacy, political liberty, and justice both of and in data use. Individuals and groups can be chilled in their personal lives, stigmatized or threatened, and used fo...
Good Data
Moving away from the strong body of critique of pervasive ?bad data? practices by both governments and private actors in the globalized digital economy, this book aims to paint an alternative, more optimistic but still pragmatic picture of the datafied future. The authors examine and propose ?good data? practices, values and principles from an interdisciplinary, international perspective. From ideas of data sovereignty and justice, to manifestos for change and calls for activism, this collection opens a multifaceted conversation on the kinds of futures we want to see, and presents concrete steps on how we can start realizing good data in practice.
