Disclosure Dilemmas

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.

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 LÃ-beck, 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 MÃ-ller; 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 MÃ-ller. 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 MÃ-ller; Index.