Ethical, Social and Psychological Impacts of Genomic Risk Communication
Ethical, Social and Psychological Impacts of Genomic Risk Communication

Author: Ulrik Kihlbom

Publisher: Routledge

Published: 2020-11-15

Total Pages: 178

ISBN-13: 1000225143

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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.

The Troubled Helix
The Troubled Helix

Author: Theresa Marteau

Publisher: Cambridge University Press

Published: 1996

Total Pages: 384

ISBN-13: 9780521586122

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This wide ranging and compelling account surveys the exciting opportunities and difficult problems which arise from the new human genetics. The availability of increasingly sophisticated information on our genetic make-up presents individuals, and society as a whole, with difficult decisions. Although it is hoped that these advances will ultimately lead the way to the effective treatment and screening for all diseases with a genetic component, at present many individuals are 'condemned' to a life sentence, in the knowledge that they have or will develop an incurable genetic disease.

Risk and Responsibilisation in Public Communication
Risk and Responsibilisation in Public Communication

Author: Antoinette Fage-Butler

Publisher: Taylor & Francis

Published: 2023-10-23

Total Pages: 166

ISBN-13: 1000987175

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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.

Assessing Genetic Risks
Assessing Genetic Risks

Author: Institute of Medicine

Publisher: National Academies Press

Published: 1994-01-01

Total Pages: 353

ISBN-13: 0309047986

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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.

A Theory of Uncertainty
A Theory of Uncertainty

Author: Andreas Klinke

Publisher: Taylor & Francis

Published: 2024-08-02

Total Pages: 283

ISBN-13: 1040102735

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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.

Cells and Surveys
Cells and Surveys

Author: National Research Council

Publisher: National Academies Press

Published: 2001-01-19

Total Pages: 388

ISBN-13: 0309171431

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What can social science, and demography in particular, reasonably expect to learn from biological information? There is increasing pressure for multipurpose household surveys to collect biological data along with the more familiar interviewer-respondent information. Given that recent technical developments have made it more feasible to collect biological information in non-clinical settings, those who fund, design, and analyze survey data need to think through the rationale and potential consequences. This is a concern that transcends national boundaries. Cells and Surveys addresses issues such as which biologic/genetic data should be collected in order to be most useful to a range of social scientists and whether amassing biological data has unintended side effects. The book also takes a look at the various ethical and legal concerns that such data collection entails.

Public Health Communication Interventions
Public Health Communication Interventions

Author: Nurit Guttman

Publisher: SAGE

Published: 2000-04-15

Total Pages: 305

ISBN-13: 0761902600

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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.

Returning Individual Research Results to Participants
Returning Individual Research Results to Participants

Author: National Academies of Sciences, Engineering, and Medicine

Publisher: National Academies Press

Published: 2018-08-23

Total Pages: 399

ISBN-13: 0309475201

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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.

Genetic Counseling Practice
Genetic Counseling Practice

Author: Bonnie S. LeRoy

Publisher: John Wiley & Sons

Published: 2020-11-16

Total Pages: 416

ISBN-13: 1119529859

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The second edition of Genetic Counseling Practice: Advanced Concepts and Skills, provides in-depth content regarding the advanced competencies for meeting patient needs across the changing landscape of genetic counseling practice. The content aligns with the Reciprocal Engagement Model (REM) of practice which integrates the biomedical knowledge and psychosocial aspects of genetic counseling. This edition has been revised and expanded to reflect advances made in the present-day field. Edited by a team two genetic counselors and a psychologist, the chapters offer a holistic picture of genetic counseling. Chapter authors are all recognized experts in the profession. The chapters are grounded in evidence-based practice and research. Each chapter includes learning activities to help readers apply concepts and skills. Featured topic areas include: Meeting the needs of culturally diverse patients Addressing challenging patient dynamics Working with children, adolescents and families Using emerging service delivery models for genetic counseling Engaging in self-reflective, deliberate practice Promoting genetic counselor professional development Genetic Counseling Practice is an indispensable guide to the complex and evolving field of genetic counseling, and this updated second edition will help practitioners and trainees alike navigate its most pressing and practical challenges with skill and care.