Hansjakob Müller

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.

Ethics of Genetic Prognosis after the 'Right to Know/Not to Know' Debate

Disclosure Dilemmas

R. J. Scott

Walter Weber

Molecular genetics has revolutionized our understanding of the susceptibility to and pathogenesis of cancer and is heralding the era of 'molecular oncology'. This progress is well illustrated by the gain in knowledge accumulated since the release of 'Familial Cancer' in 1985 - known among experts as the 'yellow book'. Cancer genes can now be identified, mapped and sequenced, and this technology has resulted in presymptomatic testing of persons at risk and the development of preventive therapeutic measures. This book provides an update of the latest advances by international experts in the field of hereditary cancer, with special emphasis on the needs of medical practice. The first part is devoted to a discussion of the mechanisms by which predispositions lead to breast and ovarian cancer, intestinal cancer, neoplasia of endocrine glands, and tumors in rare cancer syndromes. Attention is also given to epidemiological aspects of familial cancer occurrence. The second part covers genetic counseling and testing of members of high-risk families, as well as the prevention and treatment of hereditary cancer. Clearly written and well-organized, this book provides essential information not only for molecular geneticists and epidemiologists, but also for genetic counselors and oncologists.

Hansjakob Müller

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