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Thirty-five papers from the third International DNA Sampling Conference, held in Montreal in September 2002, provide a critical discussion of the socio-ethical and legal issues surrounding DNA sampling in communities and populations around the globe. Contributors address topics related to biobanks and databases; community engagement; confidentialit.
Biobanks are proliferating rapidly worldwide because they are powerful tools and organisational structures for undertaking medical research. By linking samples to data on the health of individuals, it is anticipated that biobanks will be used to explore the relationship between genes, environment and lifestyle for many diseases, as well as the potential of individually-tailored drug treatments based on genetic predisposition. However, they also raise considerable challenges for existing legal frameworks and research governance structures. This book critically examines the current governance structures in place for biobanks in England and Wales. It shows that the technologies, techniques and practices involved in biobanking do not always conform neatly to existing legal principles and frameworks that apply to other areas of medical research. Using a socio-legal approach, including interview data gathered from the scientific community, this book provides unique insights and makes recommendations about appropriate governance mechanisms for biobanking in the future. It also explores the issues around the secondary use of information, such as consent and how to protect privacy, when biobanks are accessed by a number of different third parties. These issues have relevance both within England and Wales and to a wide international audience, as well as for other areas where large datasets are used.
Concepts and Cases in Nursing Ethics is a case-based exploration of the core principles of health care ethics applied to nursing. The book is a collaboration between philosopher-ethicist Michael Yeo and nurse-ethicist and educators Anne Moorhouse, Pamela Khan, and Patricia Rodney. It thus combines philosophical and ethical analysis with extensive knowledge and experience in nursing and health care. The book is organized around six main concepts in health care ethics: beneficence, autonomy, truthfulness, confidentiality, justice, and integrity. A chapter is devoted to the elucidation of each of these concepts. In each chapter, historical background and conceptual analysis are supplemented by case studies that exemplify issues and show how the concept applies in health care and nursing practice. In this new edition, the conceptual analysis throughout has been updated and reworked in view of changes in the health care system. In addition, there is a new chapter specifically devoted to recent developments affecting nursing and other health professions. Previous case studies have been modified and new ones added to address current and emerging issues. Although the text focuses mainly on the social and political situation of nursing, the analysis has relevance also for medicine and the allied health professions, and indeed for anyone working in the health system.
Precise, accurate spatial information linked to social and behavioral data is revolutionizing social science by opening new questions for investigation and improving understanding of human behavior in its environmental context. At the same time, precise spatial data make it more likely that individuals can be identified, breaching the promise of confidentiality made when the data were collected. Because norms of science and government agencies favor open access to all scientific data, the tension between the benefits of open access and the risks associated with potential breach of confidentiality pose significant challenges to researchers, research sponsors, scientific institutions, and data archivists. Putting People on the Map finds that several technical approaches for making data available while limiting risk have potential, but none is adequate on its own or in combination. This book offers recommendations for education, training, research, and practice to researchers, professional societies, federal agencies, institutional review boards, and data stewards.
Let us not go over the old ground, let us rather prepare for what is to come. —Marcus Tullius Cicero Improvements in the health status of communities depend on effective public health and healthcare infrastructures. These infrastructures are increasingly electronic and tied to the Internet. Incorporating emerging technologies into the service of the community has become a required task for every public health leader. The revolution in information technology challenges every sector of the health enterprise. Individuals, care providers, and public health agencies can all benefit as we reshape public health through the adoption of new infor- tion systems, use of electronic methods for disease surveillance, and refor- tion of outmoded processes. However, realizing the benefits will be neither easy nor inexpensive. Technological innovation brings the promise of new ways of improving health. Individuals have become more involved in knowing about, and managing and improving, their own health through Internet access. Similarly, healthcare p- viders are transforming the ways in which they assess, treat, and document - tient care through their use of new technologies. For example, point-of-care and palm-type devices will soon be capable of uniquely identifying patients, s- porting patient care, and documenting treatment simply and efficiently.