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.

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.

Nanotechnology has been the subject of extensive assessment hype, unlike any previous field of research and development. A multiplicity of stakeholders have started to analyze the implications of nanotechnology: Technology assessment institutions around the world, non-governmental organizations, think tanks, re-insurance companies, and academics from science and technology studies and applied ethics have turned their attention to this growing field s implications. In the course of these assessment efforts, a social phenomenon has emerged a phenomenon the editors define as assessment regime.

Despite the variety of organizations, methods, and actors involved in the evaluation and regulation of emerging nanotechnologies, the assessment activities comply with an overarching scientific and political imperative: Innovations are only welcome if they are assessed against the criteria of safety, sustainability, desirability, and acceptability. So far, such deliberations and reflections have played only a subordinate role. This book argues that with the rise of the nanotechnology assessment regime, however, things have changed dramatically: Situated at the crossroads of democratizing science and technology, good governance, and the quest for sustainable innovations, the assessment regime has become constitutive for technological development.

The contributions in this book explore and critically analyse nanotechnology s assessment regime: To what extent is it constitutive for technology in general, for nanotechnology in particular? What social conditions render the regime a phenomenon sui generis? And what are its implications for science and society?"

CHRISTOPH REHMANN-SUTTER, MARCUS DUEWELL, DIETMAR MIETH When we placed "finitude", "limits of human existence" as a motto over a round of discussion on biomedicine and bioethics (which led to this collection of essays) we did not know how far this would lead us into methodological quandaries. However, we felt intuitively that an interdisciplinary approach including social and cultural sciences would have an advantage over a solely disciplinary (philosophical or theological) analysis. Bioethics, if it is to have adequate discriminatory power, should include sensitivity to the cultural contexts of biomedicine, and also to the cultural contexts of bioethics itself. Context awareness, of course, is not foreign to philosophical or theological bioethics, for the simple reason that the issues tackled in the debates (as in other fields of ethics) could not be adequately understood outside their contexts. Moral issues are always accompanied by contexts. When we try to unpack them - which is necessary to make them accessible to ethical discussion - we are regularly confronted with the fact that in removing too much of the context we do not clarify an issue, but make it less comprehensible. The context - at least some essential parts of it - is intrinsic to the issue. Unpacking in ethics is therefore a different procedure. It does not mean peeling the context off, but rather identifying which contextual elements are essential for an understanding of the key moral aspects of the issue, and explaining how they establish its particular character.

This volume explores the different dimensions of how the contingency of life, and especially human life, is relevant for ethical discussions and the normative frameworks in bioethics. It explores the relevance of the notion contingency, needs and desires for moral argumentation and bioethics. The volume discusses those notions in a philosophical perspective. Additionally, the volume is a contribution to a deeper reflection on basic philosophical assumptions of bioethics.

CHRISTOPH REHMANN-SUTTER, MARCUS DUWELL, DIETMAR MIETH When we placed "finitude," "limits of human existence" as a motto over a round of discussion on biomedicine and bioethics (which led to this collection of essays) we did not know how far this would lead us into methodological quandaries. However, we felt intuitively that an interdisciplinary approach including social and cultural sciences would have an advantage over a solely disciplinary (philosophical or theological) analysis. Bioethics, if it is to have adequate discriminatory power, should include sensitivity to the cultural contexts of biomedicine, and also to the cultural contexts of bioethics itself. Context awareness, of course, is not foreign to philosophical or theological bioethics, for the simple reason that the issues tackled in the debates (as in other fields of ethics) could not be adequately understood outside their contexts. Moral issues are always accompanied by contexts. When we try to unpack them - which is necessary to make them accessible to ethical discussion - we are regularly confronted with the fact that in removing too much of the context we do not clarify an issue, but make it less comprehensible. The context - at least some essential parts of it - is intrinsic to the issue. Unpacking in ethics is therefore a different procedure. It does not mean peeling the context off, but rather identifying which contextual elements are essential for an understanding of the key moral aspects of the issue, and explaining how they establish its particular character."

This open access book offers insights in short- and long-term experiences from families with bone marrow transplantations between minor siblings. It is based on the first extended qualitative study with 17 families about experiences with recent transplants and experiences with transplants up to 20 years in the past. It covers reflections of donors, recipients and other family members, as well as family interactions. Transplantation of bone marrow from one sibling to another who is ill with a blood cancer (such as Leukemia) is a life-saving therapy. Young children however are not in a position to give consent themselves. How should they be adequately included, depending to their age? Which ethical questions are raised for the parents both at the time of treatment and afterwards, and for the medical professionals in clinical and regulatory contexts? For an in-depth discussion of the findings the books brings together a group of leading scholars from the fields of bioethics, family sociology and philosophy of medicine.

This open access book offers insights in short- and long-term experiences from families with bone marrow transplantations between minor siblings. It is based on the first extended qualitative study with 17 families about experiences with recent transplants and experiences with transplants up to 20 years in the past. It covers reflections of donors, recipients and other family members, as well as family interactions. Transplantation of bone marrow from one sibling to another who is ill with a blood cancer (such as Leukemia) is a life-saving therapy. Young children however are not in a position to give consent themselves. How should they be adequately included, depending to their age? Which ethical questions are raised for the parents both at the time of treatment and afterwards, and for the medical professionals in clinical and regulatory contexts? For an in-depth discussion of the findings the books brings together a group of leading scholars from the fields of bioethics, family sociology and philosophy of medicine.

Nanotechnology has been the subject of extensive assessment hype, unlike any previous field of research and development. A multiplicity of stakeholders have started to analyze the implications of nanotechnology: Technology assessment institutions around the world, non-governmental organizations, think tanks, re-insurance companies, and academics from science and technology studies and applied ethics have turned their attention to this growing field s implications. In the course of these assessment efforts, a social phenomenon has emerged a phenomenon the editors define as assessment regime.

Despite the variety of organizations, methods, and actors involved in the evaluation and regulation of emerging nanotechnologies, the assessment activities comply with an overarching scientific and political imperative: Innovations are only welcome if they are assessed against the criteria of safety, sustainability, desirability, and acceptability. So far, such deliberations and reflections have played only a subordinate role. This book argues that with the rise of the nanotechnology assessment regime, however, things have changed dramatically: Situated at the crossroads of democratizing science and technology, good governance, and the quest for sustainable innovations, the assessment regime has become constitutive for technological development.

The contributions in this book explore and critically analyse nanotechnology s assessment regime: To what extent is it constitutive for technology in general, for nanotechnology in particular? What social conditions render the regime a phenomenon sui generis? And what are its implications for science and society?"

Life and nature are imperfect, uncontrollable, largely (and perhaps permanently) unknowable, that is to say: contingent. The contingency of life is a significant challenge for medicine and technology. Life sciences seem to broaden the possibilities of control to an extent that the contingency of life and nature is no longer self-evident. This very broad diagnosis raises a lot of serious questions. Is it a valid diagnosis? Are the life sciences really defying the contingency of our existence? Or we only manipulated with utopian promises? And if contingency is really being challenged, why should we worry about it? Is contingency essential for a meaningful life and way of life? This volume explores the different dimensions of how the contingency of life, and especially human life, is relevant for ethical discussions and the normative frameworks in bioethics. It explores the relevance of the notion contingency, needs and desires for moral argumentation and bioethics. The volume discusses those notions in a philosophical perspective, but pays special attention to the impact of life sciences for people with disabilities and intercultural perspectives on the bioethical debates. Additionally, the volume is a contribution to a deeper reflection on basic philosophical assumptions of bioethics.

Wish to die statements are becoming a frequent phenomenon in terminally ill patients. Those confronted by these statments need to understand the complexity of such wishes, so they can respond competently and compassionately to the requests. If misunderstood, the statements can be taken at face-value and the practitioner may not recognise that a patient is in fact experiencing ambivalent feelings at the end of life, or they may misinterpret the expressed wish to die as a sign of clinical depression. Public debate about the morality and ethics of various end-of-life care options has exploded in recent years. However, it has never been sensitive to the finer aspects of clinical reality or the experiences of patients. The Patient's Wish to Die: Research, Ethics, and Palliative Care brings together that reality and the patient's voice, combining them with different research approaches. It presents the best available knowledge and research methodologies about patients' wishes at the end-of-life, together with a series of ethical views and a discussion about the clinical implications for palliative care. The book presents material in an open and unbiased manner whilst remaining sensitive to the spiritual and existential dimensions of dying, and to the different cultural views that provide meaning to the individual. Written by the best specialists and ethics scholars from around the world, including palliative care practitioners and end-of-life scholars from countries where assisted dying practices are legalized and from those where it isn't, The The Patient's Wish to Die: Research, Ethics, and Palliative Care will prove essential reading for all those working or studying in the field of palliative care.

Der Band untersucht anthropologische, psychologische, rechtliche und ethische Probleme des Willenskonzepts. Die Medizin fuhrt Menschen in Grenzsituationen, in denen "ihr Wille" in vielerlei Hinsichten problematisch wird: Kinder sollen in die Durchfuhrung medizinischer Massnahmen einwilligen; Menschen mit Demenz koennen sich zu Therapien manchmal nicht mehr klar aussern; potentielle Teilnehmende einer klinischen Studie sind durch deren Komplexitat uberfordert, sollen aber zustimmen. Der Band fokussiert bewusst Randzonen, in denen nicht klar ist, was ein Wille ist und ob eine Willensausserung vorliegt. An diesen Randbereichen wird besser als in thematischen Kernzonen sichtbar, was Idee und Praxis des Willens leisten und was sie verdecken. Daraus ergeben sich neue Fragen zur Problematik des Entscheidens und der Einwilligung in Grenzsituationen.