Claudia Wiesemann

ZusammenfassungPsychisch kranke Personen, die eine rechtswidrige Tat im Zustand der Schuldunfähigkeit oder verminderten Schuldfähigkeit begangen haben, können auf Grundlage des § 63 und § 64 StGB zur psychiatrischen Behandlung in forensischen Kliniken untergebracht werden. Das Recht dieser Patienten auf Behandlungsverweigerung wurde in einer Entscheidung des Bundesverfassungsgerichts von 2011 substantiell gestärkt. In diesem Beitrag diskutieren wir, welcher Stellenwert Vorausverfügungen als Instrumenten der Patientenselbstbestimmung dabei zukommt. Zunächst schildern wir den Kontext der psychiatrischen Behandlung im Maßregelvollzug und erörtern die Veränderungen, die sich durch die neue rechtliche Regelung ergeben. Anhand eines Fallbeispiels stellen wir die Folgen einer Behandlungsverweigerung für Patient und Behandlungsteam dar. Wir erörtern, ob und wie Patientenverfügungen und Behandlungsvereinbarungen in der forensischen Psychiatrie eingesetzt werden können und welche zusätzlichen Maßnahmen zur Stärkung der Patientenselbstbestimmung erforderlich sind.

Human reproduction in the age of reprogenetics raises fundamental ethical and political questions. Critics of so-called liberal eugenics like Jürgen Habermas have sparked an ethical debate on whether selective genetic manipulation might undermine the natural basis of the moral self-conception and autonomy of future generations. Contrary to this perception, the authors of this article argue for a dialectic understanding of the moral challenges arising from human natality: Freedom and dependency, sociality and human embodiment, autonomy and relatedness likewise determine our human existence as moral beings. As an answer to these challenges, the authors develop a dialectic understanding of parenthood in the age of reprogenetics, thereby transcending present debates of modern reproductive medicine.

ZusammenfassungDie rechtliche Regelung der Fortpflanzungsmedizin ist dringend reformbedürftig. Das Embryonenschutzgesetz von 1990 erfasst die neuesten technischen Entwicklungen nicht, ist in manchen Bereichen unstimmig und lückenhaft, setzt die betroffenen Frauen, Paare und Kinder unnötigen gesundheitlichen Risiken aus, erschwert paradoxerweise die Durchsetzung von Kinderrechten und erzeugt Gerechtigkeitsprobleme und Rechtsunsicherheit für die betroffenen Paare und die behandelnden Ärztinnen und Ärzte.Das Embryonenschutzgesetz enthält zudem nur strafrechtliche Verbote. Diese erlauben keine angemessene Reaktion auf die medizinische Entwicklung und den gesellschaftlichen Wandel und werden der Komplexität der Materie nicht gerecht.Diese Probleme müssen gelöst werden. Der Bundesgesetzgeber verfügt seit mehr als 20 Jahren über die Kompetenz zur Regelung der Fortpflanzungsmedizin. Er sollte in der kommenden Legislaturperiode ein umfassendes Fortpflanzungsmedizingesetz schaffen.

The efforts of the European Commission to create a European Research Area in the field of biotechnology are accompanied by a growing demand for an ethical discourse. Cultural differences between the European Union's member states create a vital need to improve bioethical information structures in Europe so as to foster European bioethics discourses and to cope with ethical pluralism. Responding to the need for an increased European contribution to the international discussion on ethics in medicine and biotechnology, some of Europe's leading bioethics institutions have joined forces to establish the international network EURETHNET . 18 partners from nine European countries agreed to develop an information network and knowledge base in the field of ethics in medicine and biotechnology. This short communication displays the aims, scope and realisation of the network

Definition of the problem: Medical research with children, especially non-therapeutic research, requires particular consideration. In the current situation this kind of research is not clearly regulated by law in Germany. This entails practical problems in evaluating clinical studies from an ethical point of view. Arguments and conclusion: To develop a new policy framework the international ethical discussion is reviewed. The article analyzes the historical development of research with minors from an ethical perspective, the notion of minimal risk, criteria for evaluating risk and harm in research, consent and assent procedures, and the participation of parents and children in the planning of clinical studies. A list of proposals for minimal standard in ethical regulation of research with minors is developed.

A typical problem of modern medicine results from the gap between scientific knowledge and its application in individual cases. Whereas scientific knowledge is generalized and impersonal information, medical practice takes place under conditions which are singular, individual and irreversible. The paper examines whether prognosis is able to bridge this gap or hiatus theoreticus. It is shown that diagnosis of a single case always relies on prognostic considerations. The individual prognosis (as distinguished from the nosologic prognosis of a certain disease) enables doctors to apply scientific knowledge and practice according to the actual situation, the history and personal preferences of the patient. Prognosis – not diagnosis – therefore legitimizes medical interference. A methodology of individual prognosis as the basis for a theory of practice is discussed.

<b>Objectives:</b> To gather empirical data on how gender and educational level influence bioethical reasoning among medical students by analyzing their use of care versus justice arguments for reconciling a bioethical dilemma. <b>Setting:</b> University Departments of Medical Ethics, Social and Communication Psychology in Germany. Participants: First and fifth year medical students. Design and method: Multidisciplinary, empirical, 2-segment study of ethics in action: In intrapersonal Segment 1, the students were presented with a bioethical dilemma and then administered a 13-item questionnaire to survey their individual preferences for care versus justice arguments in resolving the conflict. The survey questioned 6 justice, 6 care-related items and 1 socially critical item. Data were analysed by gender and year of medical school. In interpersonal Segment 2, the bioethical dilemma from Segment 1 was discussed in gender-mixed and gender-homogeneous groups. Coded transcripts were evaluated to identify prevalences in care versus justice reasoning. <b>Results:</b> Data on 462 medical students were evaluable (n=338 in Segment 1, n=168 in Segment 2, n=44 overlap). Gender and level of education had no effect on moral reasoning in intrapersonal Segment 1, but significantly affected reasoning in interpersonal Segment 2, where women significantly tended to use more care-orientated arguments. Justice arguments predominated the group discussions. <b>Conclusion:</b> Interpersonal contexts affect moral reasoning in medical students, probably by amplifying the socialisation relating to gender and educational level. Care orientation is associated with the female gender. Professional socialisation tends to reduce the diversity and richness of moral reasoning towards a more justice-weighted orientation. Medical ethics should teach both justice and care reasoning modes in order to broaden physicians' ability to reconcile bioethical dilemmas

The medical management of DSD/ Intersex in early childhood has been criticized by patients' advocates as well as bioethicists from an ethical point of view. Some call for a moratorium of any feminizing or masculinizing operations before the age of consent except for medical emergencies. No exhaustive ethical guidelines have been published until now. In particular, the role of the parents as legal representatives of the child is controversial. In the article, we develop, discuss and present ethical principles and recommendations for the medical management of intersex/DSD in children and adolescents. We specify three basic ethical principles that have to be respected and substantiate them. The article includes a critical discussion of the best interest of the child and of family privacy. The argumentation draws upon recommendations by the working group "Bioethics and Intersex" within the German Network DSD/Intersex, which are presented in detail. Unlike other recommendations with regard to intersex, these guidelines represent a comprehensive view of the perspectives of clinicians, patients and their families. Conclusion: The working group identified three leading ethical principles that apply to DSD management: (1) to foster the well-being of the child and the future adult, (2) to uphold the rights of children and adolescents to participate in and/or self-determine decisions that affect them now or later and (3) to respect the family and parent-child relationships. Nine recommendations for the management of DSD indicate how these ethical principles can spelled out and balanced against each other in the clinical setting.

Conducting empirical research on gender in medical ethics is a challenge from a theoretical as well as a practical point of view. It still has to be clarified how gender aspects can be integrated without sustaining gender stereotypes. The developmental psychologist Carol Gilligan was among the first to question ethics from a gendered point of view. The notion of care introduced by her challenged conventional developmental psychology as well as moral philosophy. Gilligan was criticised, however, because her concept of ‘two different voices’ may reinforce gender stereotypes. Moreover, although Gilligan stressed relatedness, this is not reflected in her own empirical approach, which still focuses on individual moral reflection. Concepts from social psychology can help overcome both problems. Social categories like gender shape moral identity and moral decisions. If morality is understood as being lived through actions of persons in social relationships, gender becomes a helpful category of moral analysis. Our findings will provide a conceptual basis for the question how empirical research in medical ethics can successfully embrace a gendered perspective

Modern repro-genetics is going to change the way we conceive our children, and will have a substantial influence on the family. Two concepts of the family have been present in the ethical debate: the traditional model and the care model of the family. The first one has been rightly criticized because it privileges form over function. I will show that the second model is also insufficient and does not answer to the moral challenge of human natality, particularly from a child's point of view. Instead, I will suggest a third, kinship model of the family as moral agent. In post-traditional and post-patriarchal societies, the family must be reconsidered as actor in the ethical debates. This poses a challenge for ethical theory. The family's interests are best protected by a concept of relational privacy.

ZusammenfassungDas ethische Prinzip des Respekts vor der Autonomie des Patienten/probanden hat in der modernen Medizin mittlerweile weltweit Bedeutung erlangt. Die Betonung der Autonomie des Patienten und Probanden in allen in der letzten Zeit verabschiedeten internationalen Deklarationen gibt dieser Tendenz unmissverständlich Ausdruck. Doch wenngleich diese Entwicklung unstrittig positiv ist, wirft sie dennoch eine Reihe von Fragen auf, die mit der Kodifizierung, Interpretation, Reichweite und Anwendung dieses universalen Prinzips verbunden sind. Die Antworten auf diese Fragen entscheiden darüber, ob Autonomie als hilfreiches, emanzipatorisches oder als überforderndes, gar hegemoniales Prinzip begriffen wird. Diese normativen Probleme werden anhand von Beispielen aus der globalen Medizinethik verdeutlicht. Was in modernen Gesellschaften als Autonomie bezeichnet und für die Praxis fruchtbar gemacht wird, ist als ein soziales Konstrukt zu verstehen, nicht im Sinne einer Schimäre, sondern im Sinne einer soziokulturellen Leistung, die auf komplexen, historisch gewachsenen und kulturell geprägten Interaktionen von Gesellschaften, Institutionen und Individuen beruht.

The paper discusses the current medical practice of "gender verification" in sports from an ethical point of view. It takes the recent public discussion about 800-meter runner Caster Semenya as a starting point. At the World Championships in Athletics 2009 in Berlin, Germany, Semenya was challenged by competitors as being a so called "sex impostor". A medical examination to verify her sex ensued. The author analyses whether athletes like Semenya could claim a right not to know that is generally acknowledged in human genetics and enforced by international and national genetic privacy laws. The relevance of this right for genetic diagnosis in sports is discussed. To this end, the interests of the athlete concerned and of third parties are balanced according to the expected benefits and harms. Harm is documented in a number of cases and includes unjustified disqualification, severe sex and gender identity crisis, demeaning reactions, social isolation, depression and suicide. Benefits are dubious as most cases of intersex are considered irrelevant for sports competition. It has to be concluded that the benefits to be gained from "gender verification" in sports via genetic testing do not outweigh the grave individual disadvantages. The current practice of athletic associations to largely ignore the right of competitors not to know does not comply with prevailing ethical provisions on the protection of sensitive personal data. Therefore, genetic "gender verification" in sports should be abolished.

Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly complex and socially differentiated healthcare systems a number of social groups, each committed to a common cause, are involved in medical decisions and sometimes even try to influence bioethical discourses according to their own agenda. We argue that the significance of these collective actors is unjustifiably neglected in bioethics. The growing influence of collective actors in the fields of biopolitics and bioethics leads us to pursue the question as to how collective moral claims can be characterized and justified. We pay particular attention to elaborating the circumstances under which collective actors can claim ‘collective agency.’ Specifically, we develop four normative-practical criteria for collective agency in order to determine the conditions that must be given to reasonably speak of ‘collective autonomy’. For this purpose, we analyze patient organizations and families, which represent two quite different kinds of groups and can both be conceived as collective actors of high relevance for bioethical practice. Finally, we discuss some practical implications and explain why the existence of a shared practice of trust is of immediate normative relevance in this respect.

It has been a long tradition to quote from Joseph Dietl's 'manifesto' of therapeutic nihilism from 1845 to illustrate the perils of medical extremism. But Dietl's claim for medicine as a natural science cannot fully be understood without considering the social and political circumstances the developing New Vienna School had to face. The professionalization of Viennese academic medicine was opposed by the forces of restaurative absolutism and, in particular, the traditional preponderance of medical practitioners who played a major role in the medical faculty

Off-label drug use in paediatrics is associated with an increased risk of adverse drug reactions. Any risk-benefit analysis has to be based on value judgments that should include parents' views. However, nothing is known so far about the parents' perspective on this critical issue. Therefore, a quantitative survey with parents of healthy and chronically ill children was carried out (n=94). Knowledge about the practice of off-label use is generally poor in both groups. Surprisingly, this is also true for the parents of children with chronic disease. 9.3% of the parents of chronically ill children and 19.6% of the parents of healthy children would refuse treatment with an off-label drug. Parents who have poor knowledge about the practice of off-label use tend to refuse to volunteer their child for study participation. Therefore, the information of parents on the off-label use of drugs is important to meet ethical standards and to increase the parents’ acceptance of medical studies with children.