Teaching ethics in public health programmes is not routine everywhere – at least not in most schools of public health in the European region. Yet empirical evidence shows that schools of public health are more and more interested in the integration of ethics in their curricula, since public health professionals often have to face difficult ethical decisions.

Developments in Non-Invasive Prenatal Testing (NIPT) and cell-free fetal DNA analysis raise the possibility that antenatal services may soon be able to support couples in non-invasively testing for, and diagnosing, an unprecedented range of genetic disorders and traits coded within their unborn child’s genome. Inevitably, this has prompted debate within the bioethics literature about what screening options should be offered to couples for the purpose of reproductive choice. In relation to this problem, the European Society of Human Genetics (ESHG) and (...) American Society of Human Genetics (ASHG) tentatively recommend that any expansion of this type of screening, as facilitated by NIPT, should be limited to serious congenital and childhood disorders. In support of this recommendation, the ESHG and ASHG cite considerations of distribution justice. Notably, however, an account of justice in the organization and provision of this type of screening which might substantiate this recommendation has yet to be developed. This paper attempts to redress this oversight through an investigation of Norman Daniels’ theory of Just health: meeting health needs fairly. In line with this aim, the paper examines what special moral importance (for Just health) screening for the purpose of reproductive choice might have where concerning serious congenital and childhood disorders in particular. The paper concludes that screening for reproductive choice where concerning serious congenital and childhood disorders may be important for providing women with fair opportunity to protect their health (by either having or not having an affected child). (shrink)

Information is clearly vital to public health, but the acquisition and use of public health data elicit serious privacy concerns. One strategy for navigating this dilemma is to build 'trust' in institutions responsible for health information, thereby reducing privacy concerns and increasing willingness to contribute personal data. This strategy, as currently presented in public health literature, has serious shortcomings. But it can be augmented by appealing to the philosophical analysis of the concept of trust. Philosophers distinguish trust and trustworthiness from (...) cognate attitudes, such as confident reliance. Central to this is value congruence: trust is grounded in the perception of shared values. So, the way to build trust in institutions responsible for health data is for those institutions to develop and display values shared by the public. We defend this approach from objections, such as that trust is an interpersonal attitude inappropriate to the way people relate to organisations. The paper then moves on to the practical application of our strategy. Trust and trustworthiness can reduce privacy concerns and increase willingness to share health data, notably, in the context of internal and external threats to data privacy. We end by appealing for the sort of empirical work our proposal requires. (shrink)

ZusammenfassungPatientenmobilität und grenzüberschreitende Gesundheitsversorgung sind alltägliche Phänomene in der Europäischen Union. Im Jahr 2011 hat die EU eine Richtlinie erlassen, um in diesem Kontext Rechtssicherheit herzustellen. Bisher gibt es keine umfassenden systematischen Studien über ethische Aspekte grenzübergreifender Gesundheitsversorgung. In dieser Arbeit werden die rechtlichen Entwicklungen der grenzübergreifenden Gesundheitsversorgung dargestellt und die in der Literatur vereinzelt erwähnten ethisch relevanten Aspekte heuristisch und auf Patiententypologien aufbauend systematisch inventarisiert und diskutiert. Es zeigt sich, dass die Möglichkeit der Patientenmobilität und die damit vor allem (...) verbundenen Finanzierungsregelungen die Autonomie einiger Patienten sicherlich verbessern kann. Allerdings können wohl nicht alle Patienten Versorgungsverbesserungen erwarten. Im Gegenteil können sogar negative Konsequenzen für einige Patienten folgen, was vor allem aus gerechtigkeitstheoretischen Überlegungen kritisch zu sehen ist. (shrink)

International guidelines recommend that prenatal screening for fetal abnormalities should only be offered within a non-directive framework aimed at enabling women in making meaningful reproductive choices. Whilst this position is widely endorsed, developments in cell-free fetal DNA based Non-Invasive Prenatal Testing are now raising questions about its continued suitability for guiding screening policy and practice. This issue is most apparent within debates on the scope of the screening offer. Implied by the aim of enabling meaningful reproductive choices is the idea (...) that screening services should support women in accessing prenatal tests that best enable them to realize the types of reproductive choice that they find important. However, beyond whatever options meet the quality standards required for facilitating an informed decision, the remaining criteria of facilitating autonomous choice is strictly non-directive. As a result, policy makers receive little indication prior to consultation with each individual woman, about what conditions should be prioritized during the offer of screening. In this paper we try to address this issue by using the capabilities approach to further specify the non-directive aim of enabling meaningful reproductive choice. The resulting framework is then used to assess the relative importance of offering prenatal screening where concerning different types of genetic condition. We conclude that greater priority may be ascribed to offering prenatal screening for conditions that more significantly diminish a woman’s central capabilities. It follows that serious congenital and earlier-onset conditions are more likely to fulfill these criteria. (shrink)

Ethik und Seelsorge sind Bereiche, in denen menschliches Sein und Handeln reflektierend begleitet wird, um Orientierung, Unterstützung oder Trost zu geben. Bei Berufen, in denen Menschen auf eine gewaltverstrickte Lebenswelt treffen, ihrerseits staatlich legitimiert Gewalt ausüben und selbst von Gewalt betroffen sind, tauchen dabei besondere Widersprüche und Sinnfragen auf. Diese Herausforderungen in den Blick zu nehmen und an der Schnittstelle von Philosophie und praktischer Theologie zu erörtern, so wie es der Münsteraner Theologe Werner Schiewek richtungsweisend vorgezeichnet hat, ist das Ziel (...) des vorliegenden Bandes. (shrink)

International guidelines recommend that prenatal screening for fetal abnormalities should only be offered within a non-directive framework aimed at enabling women in making meaningful reproductive choices. Whilst this position is widely endorsed, developments in cell-free fetal DNA based Non-Invasive Prenatal Testing are now raising questions about its continued suitability for guiding screening policy and practice. This issue is most apparent within debates on the scope of the screening offer. Implied by the aim of enabling meaningful reproductive choices is the idea (...) that screening services should support women in accessing prenatal tests that best enable them to realize the types of reproductive choice that they find important. However, beyond whatever options meet the quality standards required for facilitating an informed decision, the remaining criteria of facilitating autonomous choice is strictly non-directive. As a result, policy makers receive little indication prior to consultation with each individual woman, about what conditions should be prioritized during the offer of screening. In this paper we try to address this issue by using the capabilities approach to further specify the non-directive aim of enabling meaningful reproductive choice. The resulting framework is then used to assess the relative importance of offering prenatal screening where concerning different types of genetic condition. We conclude that greater priority may be ascribed to offering prenatal screening for conditions that more significantly diminish a woman’s central capabilities. It follows that serious congenital and earlier-onset conditions are more likely to fulfill these criteria. (shrink)

In this article, the authors attempt to build a bridge between economic theory and medical ethics to offer a new perspective to tackle ethical challenges in the physician–patient encounter. They apply elements of new institutional economics to the ethically relevant dimensions of the physician–patient relationship in a descriptive heuristic sense. The principal–agent theory can be used to analytically grasp existing action problems in the physician–patient relationship and as a basis for shaping recommendations at the institutional level. Furthermore, the patients’ increased (...) self-determination and modern opportunities for the medical laity to inform themselves lead to a less asymmetrical distribution of information between physician and patient and therefore require new interaction models. Based on the analysis presented here, the authors recommend that, apart from the physician’s necessary individual ethics, greater consideration should be given to approaches of institutional ethics and hence to incentive systems within medical ethics. (shrink)