Disclosure Dilemmas

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.

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.