The increased complexity of health information management sows the seeds of inequalities between health care stakeholders involved in the production and use of health information. Patients may thus be more vulnerable to use of their data without their consent and breaches in confidentiality. Health care providers can also be the victims of a health information system that they do not fully master. Yet, despite its possible drawbacks, the management of health information is indispensable for advancing science, medical care and public (...) health. Therefore, the central question addressed by this paper is how to manage health information ethically? This article argues that Paul Ricœur’s ‘‘little ethics’’, based on his work on hermeneutics and narrative identity, provides a suitable ethical framework to this end. This ethical theory has the merit of helping to harmonise self-esteem and solicitude amongst patients and healthcare providers, and at the same time provides an ethics of justice in public health. A matrix, derived from Ricœur’s ethics, has been developed as a solution to overcoming possible conflicts between privacy interests and the common good in the management of health information. (shrink)

ZusammenfassungDer vorliegende Beitrag erläutert anhand ausgewählter Beispiele das Potential von Dystopien für die Bioethik. Hierfür werden bestehende Ansätze narrativer Ethik kritisch rekonstruiert und erweitert. Mittels eines Theorieangebots aus der Literaturwissenschaft wird vorgeschlagen, moralische Überzeugungen, die Dystopien motivieren, in kohärentistische Reflexions- und Begründungsverfahren einzubeziehen. Weiterhin wird systematisch herausgearbeitet, welches Potential Dystopien durch sozio-kulturell dichte Szenarien, einen zeitgeschichtlichen Kontext und durch eine Sensibilisierung für die moralische Relevanz der Sprache für die bioethische Forschung bieten. Die dargestellten methodologischen Überlegungen bieten zum einen praktische Bezugspunkte (...) für didaktische Ansätze und zum anderen für die öffentliche Deliberation. Die Analyse zeigt jedoch auch, dass Dystopien jenseits einer Illustration oder Warnung eigene moralische Positionen zur Diskussion stellen. (shrink)

Trisomy 13 and 18 are rare chromosomal abnormalities associated with high morbidity and mortality. Improved survival rates and increased prevalence of aggressive medical intervention have resulted in families and physicians holding different perspectives regarding the appropriate management of children with T 13/18. Families were invited for open-ended interviews regarding their experiences with the medical care of a child with T 13/18 over the past 5 years. Seven of 33 invited families were surveyed; those who had spent more than 40 days (...) in the hospital were most likely to accept the invitation. Grounded theory technique was used to analyze the interviews. This method elicited four key themes regarding family perspectives on children with T 13/18: they are unique and significant, they transform the lives of others, their families can feel overwhelmed and powerless in the medical setting, their families are motivated to “carry the torch” and tell their story. Families also emphasized ways in which Internet support groups can provide both positive and negative perspectives. The ensuing discussion explores the difficulties of parents and physicians in forecasting the impact that T 13/18 will have on families and emphasizes a narrative approach to elicit a map of the things that matter to them. The paper concludes that while over-reliance on dire prognostic data can alienate families, examining the voice, character and plot of patient stories can be a powerful way for physicians to foster shared decision-making with families. (shrink)