Disclosure Dilemmas: Ethics of Genetic Prognosis after the 'Right to Know/Not to Know' Debate, 1st Edition (Hardback) book cover

Disclosure Dilemmas

Ethics of Genetic Prognosis after the 'Right to Know/Not to Know' Debate, 1st Edition

By Hansjakob Müller

Edited by Christoph Rehmann-Sutter


296 pages

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pub: 2009-06-15
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There exists today a fast growing availability of personal genetic information. Its prognostic impact and value for an individual or family member's health is sometimes unclear, whilst at other times it is clear-cut. The issue of whether to disclose genetic information does however have wide ranging implications. Avoiding the rhetoric of 'genetic exceptionalism', and drawing on an expanded field of bioethical, sociological and anthropological research, this book sets a new agenda for discussing the ethics surrounding the disclosure of prognostic genetic information. A hermeneutical approach reconsiders the ethics of disclosure in a variety of contexts in which genetic information is generated, requested, interpreted or communicated - from the provider perspective, but also from the moral perspectives of clients and their families. It is in situations of disclosure, in these different contexts, that genetic information meets morality. Providers and recipients can become vulnerable to the revelation or concealment of information, and the forms in which it may be provided. Disclosure Dilemmas invites readers to explore these contexts from an ethical viewpoint and will be a valuable resource for anyone with an interest in biomedical ethics.


'This is a simply splendid book, at the cutting edge of bioethics, clinical genetics, and the social sciences. This deserves to be a landmark in scholarship on the ethics and practice of clinical medicine. Any clinician, ethicist or social scientist interested in contemporary medical practice would profit from reading it.' Richard Ashcroft, Queen Mary University of London, UK 'I heartily recommend this book both for practitioners of clinical genetics and genetic counselling and for all those interested in the social and ethical issues that arise in the clinical setting. The editors have assembled a very fine set of essays of 'informed reflection' upon these topics, written by a first rate set of international contributors.' Angus Clarke, Cardiff University, UK '…this book is highly recommended for everyone interested in the impact of our actions on future people-not for philosophers only.' Medicine, Health Care & Philosophy '…this book sketches a thorough map of some of the most pressing ethical issues arising from current developments in biomedicine. Its attempt to bridge the gaps between bioethics, genetic medicine, law and sociology is very valuable and makes the volume potentially useful to those from any of these disciplines… this volume shows quite compellingly the importance of taking seriously into account the medical, legal and social contexts in which biomedicine is situated. It will certainly enrich those who are interested in the applied ethics of biomedicine.' Genomics, Society and Policy

Table of Contents

Contents: Introduction, Christoph Rehmann-Sutter and Hansjakob Müller; Part 1 Setting the Scene: The right to know and the right not to know - 10 years on, Ruth Chadwick; Genetic counseling: placing the room in context, Barbara Katz Rothman; Genetic counselling: clinical settings and constraints, Hansjakob Müller. Part 2 Cases and Issues: Prevention of harmful false diagnosis versus threat by disclosure of an inheritable disease - a medical case, David Winkler and Philippe Lyrer; Communication yes, but how - and what? Commentary to the case presented by David Winkler and Philippe Lyrer, Christoph Rehmann-Sutter; The need for an ethics of kinship: decision stories and patients' context, Rouven Porz; Testing for susceptibility genes: a cautionary tale, Margaret Lock; 'If only I had (not) known that': about risk-individualization, chance-specification and the loss of certainty of not-knowing, Tjeerd Tymstra; The symbolic fallout of gene talk: replacing the person with manageable constructs, Silja Samerski; Predictive genetic testing of adolescents at risk of inherited arrhythmic death, Jane Kaye, Michael Parker and Edward Blair. Part 3 Responsibilities: How legal frameworks construct patterns of liability in genetic counseling: an international perspective, Daniel Wied, Susanne Listl and Maximilian Seibl; Responsibility towards relatives, Michael Steel; Careful communication of 'bad news': the cancer experience, Wolf Langewitz; The responsibility of the truth-teller, Thomas Cerny; Practising informed choice. Decision making and prenatal risk assessment - the Danish experience, Nete Schwennesen, Lene Koch and Mette Nordahl Svendsen; Receiving and interpreting information: a joint enterprise, Jackie Leach Scully; Without disclosure, no informed choice, Peter Miny; Allowing agency: an ethical model for communicating personal genetic information, Christoph Rehmann-Sutter; Conclusions, Christoph Rehmann-Sutter and Hansjakob Müller; Index.

About the Author/Editor

Christoph Rehmann-Sutter is a philosopher and molecular biologist, specialising in bioethics. He is Professor of Theory and Ethics in Biosciences at the University of Lübeck, Germany. From 2001-2009 he was President of the Swiss National Advisory Commission on Biomedical Ethics. He has published extensively in the fields of ethics of genetics and bioethics and is a Visiting Professor at BIOS, London School of Economics.

About the Series

Medical Law and Ethics

Medical Law and Ethics
The 21st century seems likely to witness some of the most major developments in medicine and healthcare ever seen. At the same time, the debate about the extent to which science and/or medicine should lead the moral agenda continues, as do questions about the appropriate role for law. This series brings together some of the best contemporary academic commentators to tackle these dilemmas in a challenging, informed and inquiring manner. The scope of the series is purposely wide, including contributions from a variety of disciplines such as law, philosophy and social sciences.

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Subject Categories

BISAC Subject Codes/Headings:
LAW / Jurisprudence