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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."
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."
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