Mats G. Hansson - Böcker

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.

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 present work has emerged as the result of several years' involvementin various multidisciplinary research projects which have been carried out within the - search Programme in Biomedical Ethics at Uppsala University, now the Centre for Bioethics at Karolinska Institutet and Uppsala University. I am grateful to various colleagues who have taken part, whether brie?y or at length, in discussions of the concepts of privacy and integrity. Hearty thanks must go to Gert Helgesson, Ulrik von Essen, Par Segerdahland Richard Wessman who have read the initial version of the book and provideduseful comments. I am particularlyindebted to Par for taking the trouble to read the whole manuscript a second time. Arne Ohman and his - searchgroupatthe PsychologySectionin theDepartmentofClinical Neurosciences at Karolinska Institutet read an earlier version of Chapters 3 and 4. This provided a constructive and rewarding discussion which was of particular value to me since psychologydid not form part of my own professionaltraining. Sven Danielsson and the members of his research seminar in practical philosophy at Uppsala University read Chapters 5 and 6 and offered constructivecriticism.Their critical views helped me to try to express more clearly the aim of these chapters within the framework of the book as a whole. All the readers of the book or parts of it can certainly have reason to wish for further revisions or indeed for a different presentation of the problem of understanding the role of the agent in the private sphere.

The present work has emerged as the result of several years' involvementin various multidisciplinary research projects which have been carried out within the - search Programme in Biomedical Ethics at Uppsala University, now the Centre for Bioethics at Karolinska Institutet and Uppsala University. I am grateful to various colleagues who have taken part, whether brie?y or at length, in discussions of the concepts of privacy and integrity. Hearty thanks must go to Gert Helgesson, Ulrik von Essen, Par Segerdahland Richard Wessman who have read the initial version of the book and provideduseful comments. I am particularlyindebted to Par for taking the trouble to read the whole manuscript a second time. Arne Ohman and his - searchgroupatthe PsychologySectionin theDepartmentofClinical Neurosciences at Karolinska Institutet read an earlier version of Chapters 3 and 4. This provided a constructive and rewarding discussion which was of particular value to me since psychologydid not form part of my own professionaltraining. Sven Danielsson and the members of his research seminar in practical philosophy at Uppsala University read Chapters 5 and 6 and offered constructivecriticism.Their critical views helped me to try to express more clearly the aim of these chapters within the framework of the book as a whole. All the readers of the book or parts of it can certainly have reason to wish for further revisions or indeed for a different presentation of the problem of understanding the role of the agent in the private sphere.