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This volume presents the ethical implications of risk information as related to genetics and other health data for policy decisions at clinical, research and societal levels. Ethical, Social and Psychological Impacts of Genomic Risk Communication examines the introduction of new types of health risk information based on faster, cheaper and larger sets of genetic or genomic analysis. Synthesizing the results of a five-year interdisciplinary project, it explores the unsolved ethical and social questions around the sharing of this data, such as: What is best practice in risk communication? What are the normative presumptions and ethical consequences of an increased individual responsibility for ones’ health? And how does one deal with the gap between the knowledge of risk and the lack of therapeutic options which often exist for complex diseases, such as dementia or some types of cancer? Drawing on contributions from over 20 experts in the field, this collection examines these questions from a liberal bioethics’ perspective, advocating for contextual and cultural-sensitive ethical discussions. This book will be of great interest to students and scholars of theoretical and clinical medical ethics, medical sociology, risk communication and ethics of risk, as well as professionals in clinical genetics.
Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.
This book explores the connections between risk and responsibilisation in official communication to the public about the global risks of the pandemic and climate change. Our media spheres in the 2020s have been saturated with information about what we should or should not be doing to meet the challenges of the COVID-19 pandemic and climate change. Although the ability of risk communication to ‘responsibilise’ the public is central to its functioning in our societies, this aspect has so far been under-investigated in academia. To address this lacuna, Antoinette Fage-Butler develops a discursive approach to risk communication that focuses on the values that are communicated in risk messages. Examples of official risk communication about the pandemic and climate change from national and transnational contexts are analysed and compared, leading to new empirical findings and theoretical insights about the nature of risk and responsibilisation. Fage-Butler also builds on recent stirrings in the evolving field of risk communication that highlight the importance of cultural and value-related factors. Overall, this book will equip researchers with an approach to risk communication that reflects the complexity of today’s global risk challenges. Risk and Responsibilisation in Public Communication will be of great interest to students and scholars of risk communication, public health and environmental studies.
This is a PhD dissertation. Ethical particularism claims that any non-moral feature that in one situation is a reason why something is, for example, morally wrong, may in another situation be morally irrelevant or have an opposite moral valence. Ethical particularism entails, in other words, the non-existence of true or sound moral principles. Actions, persons, and situations acquire their moral features contextually in a way that escapes codification in principled terms. Particularism comes in this way in conflict with a classical approach to moral philosophy
Using sources from classical to modern that broach the phenomenon of uncertainty and its relation to risk, this book creates a novel approach to the recognized but theoretically often unattended issue of uncertainty. Andreas Klinke develops a new, general theory of uncertainty that provides a taxonomy of categories which are deduced from a critical inventory in philosophy, social and natural sciences, and risk research. Comprising six parts, the philosophical grounding of uncertainty sets the stage for the following philosophical and social scientific accounts and explanation of four distinctive guises of uncertainty that form a taxonomic notion and rationale: ontological, epistemological, linguistic-communicative, and teleological uncertainty. The theoretical-conceptual rumination provides a complex, differentiated view of the anatomy of uncertainty and an understanding that can be used in further theoretical and empirical research, as well as socio-political practice. The latter is delineated in the final part addressing the societal domestication of uncertainty. This book will be of great interest to scholars and students in philosophy, social and natural sciences, risk research, as well as inter- and transdisciplinary science fields.
The ethical dimensions of health communicators' interventions and campaigns are brought into question in this thought-provoking book. Examining the efforts to effect behavior change, the author questions how far health communication can and should go in changing people's values. The author broadens the current analysis of interventions and presents conceptual frameworks that help identify values and justifications that are embedded in health communication goals, strategies, and evaluation criteria. This critical approach helps explain how and why choices are made in design and implementation, and provides constructs and frameworks to examine them. It also widens the criteria for program evaluation and policymaking, and provides practitioners, planners, policy-makers, researchers, and students with practice-oriented questions.
When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research resultsâ€"such as results with unknown validityâ€"and the associated burdens on the research enterprise are competing considerations. Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholdersâ€"investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participantsâ€"and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations.
Clinical Genome Sequencing: Psychological Aspects thoroughly details key psychological factors to consider while implementing genome sequencing in clinical practice, taking into account the subtleties of genetic risk assessment, patient consent and best practices for sharing genomic findings. Chapter contributions from leading international researchers and practitioners cover topics ranging from the current state of genomic testing, to patient consent, patient responses to sequencing data, common uncertainties, direct-to-consumer genomics, the role of genome sequencing in precision medicine, genetic counseling and genome sequencing, genome sequencing in pediatrics, genome sequencing in prenatal testing, and ethical issues in genome sequencing. Applied clinical case studies support concept illustration, making this an invaluable, practical reference for this important and multifaceted topic area within genomic medicine.
Genomics is the study of the entire human genome. Genomics explores not only the actions of single genes, but also the interactions of multiple genes with each other and with the environment. As a result, genomics has great potential for improving the health of the public. However, realizing the benefits of genomics requires a systematic evaluation of its potential contributions and an understanding of the information necessary to facilitate the translation of research findings into public health strategies. In October 2004, the Institute of Medicine convened a workshop to discuss major scientific and policy issues related to genomics and public health, examine major supports for and challenges to the translation of genetic research into population health benefits, and suggest approaches for the integration of genomic information into strategies for promoting health and preventing disease. Implications of Genomics for Public Health summarizes the discussions and presentations from this workshop.