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"This book discusses a range of methodological issues for an interdisciplinary bioethics. How can bioethics be an enterprise that does not only isolate issues and moral reasons but also (re)contextualises them? What are the strengths and weaknesses of different traditional and innovative modes of ethical work in terms of these tasks? By introducing the term ""finitude"" in the sense of limits of human existence, limits of human knowledge and knowledge capacity, a difference was set in the cultural apprehension of medicine. Is medicine aimed at overcoming our existential limits: to fight diseases and prolong life? Finitude reintroduces the existential and cultural basis on which every medicine (limits-sensitive or off-limits medicine) depends, but it concerns also ethical judgment. An apprehension of the limitations of different ethical approaches to biomedicine, however, could strengthen the collaborative effort of an interdisciplinary bioethics that embraces also cultural studies and social sciences."

BACKGROUND: Precision medicine development is driven by the possibilities of next generation sequencing, information technology and artificial intelligence and thus, raises a number of ethical questions. Empirical studies have investigated such issues from the perspectives of health care professionals, researchers and patients. We synthesize the results from these studies in this review. METHODS: We used a systematic strategy to search, screen and assess the literature for eligibility related to our research question. The initial search for empirical studies in five data bases provided 665 different records and we selected 92 of these publications for inclusion in this review. Data were extracted in a spreadsheet and categorized into different topics representing the views on ethical issues in precision medicine. RESULTS: Many patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health. CONCLUSIONS: National legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine's benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients' decisions must be greatly enhanced by ...

Die Knochenmarkspende von Kindern für Geschwister, die an Leukämie erkrankt sind, ist eine lebensrettende Therapie. Kinder sind aber noch nicht in der Lage, selbst eine Einwilligung zu geben. Wie sollen Kinder beteiligt werden? Welche ethischen Fragen stellen sich? Die Beiträge diskutieren moralische, rechtliche, psychologische, philosophische und gesellschaftliche Aspekte: Fragen zur Freiwilligkeit bei der Einwilligung zu einer Spende, zur Verletzlichkeit des Kindes und zu Verstrickungen in Familienbeziehungen, zum Verhältnis von Recht und Ethik, zur möglichen Diskrepanz von Kindeswohl und Kindeswille und zu den Kinderrechten. Wie sich zeigt, geht es um mehr als um die Einwilligung selbst, nämlich um das Integrierenkönnen der Spende (oder in seltenen Fällen der Entscheidung gegen sie) in die Biographie des Spenderkindes, um die psychische und narrative Verarbeitung innerhalb der Familiengeschichte, um die Sicht auf die Geschehnisse aus der Retrospektive Jahre später. Diese Aspekte haben Implikationen für das Verständnis und die Bedeutung von 'Zustimmung und Zumutung' auch in anderen Bereichen der Medizin, in denen eine rettende Behandlung kaum abzulehnen ist

Results Many patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health. Conclusions National legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine's benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients' decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment.

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.

A multiplicity of stakeholders have begun to analyze the implications of nanotechnology. In the course of these efforts, a social phenomenon has emerged, one defined in this book as assessment regime, which explores and critically analyses this regime.

This paper discusses a case vignette that captures an ethically challenging situation in qualitative research. The study was about families who had experienced a life-saving bone marrow transplantation between siblings, who were children at the time of transplantation. A difficult situation emerged during a joint family interview that took place a few years after the transplantation. Parents, donor and the recipient were present, both still children. This interview technique produced unique, rich, and nuanced data about the family dynamics, about how the family constructed relationships and identity ("doing family"). The difficulties included a confrontation of the 10-year old donor child with accusations and pejorative statements from the other family members and his sidelining from the conversation. The interviewers have been acutely aware that their presence in this situation in this moment was an intrusion into family dynamics. In his commentary, Simon Woods emphasizes a model of ethical reflexivity, which shows how reflexive researchers can incorporate moral reflection at the different stages of the research process. Tim Henning argues for a morally engaged interviewer: the researcher should not stay uninvolved and should show willingness to actually engage in a moral discourse with the participants. Since the actual harms were caused not during the interviews but long before, it may be beneficial to bring them out in the open, as a matter for discussion, painful though it may be. The authors of the vignette (Madeleine Herzog, Martina Jürgensen, Christoph Rehmann-Sutter and Christina Schües) respond to the commentaries by endorsing the model of the reflexive researcher while rejecting (for methodological and moral reasons) the model of the morally engaged researcher.

How does the idea of enhancement relate to disability? At first glance, it might seem simple: enhancement is gain, disability is loss of function, but a closer looks reveals a rich and complex relationship, where the disability perspectives offers an invaluable insight in unpicking the controversy surrounding the social and ethical implications of improving the human condition. While rejecting a dualistic divide between 'therapy' and 'enhancement', enhancement bioethics can benefit from the study of interdisciplinary disability studies by placing the question of a 'better life' for those who might become enhanced on experiential ground; in preventing bioethics from relying on reductionist biomedical models of functional upgrade; in considering ambivalence in and the side effects of improvements; and in making bioethics more alert to possible discriminatory implications