Patient passports and vulnerability: Disjunctures in health policy instruments for people with rare diseases.

Rare diseases have had a special status within European Union (EU) health policy since the late 1990s. According to key EU legal documents, rare disease patients are entitled to the same good quality care as others. These individuals are particularly vulnerable due to the "low prevalence" and "uniqueness" of their disease.

'Small' data, isolated populations, and new categories of rare diseases in Finland and Poland.

Health policy and academic discourses on rare diseases and people with rare conditions frequently employ terms such as 'low prevalence' and 'unique' to characterize the smallness of the population under consideration and to justify targeted action toward these patient groups. This paper draws from recent anthropological scholarship on smallness and data, ethnographic research in Finland and Poland, as well as document and media analysis to examine how data is utilized in the context of isolated populations that are considered sites of rare diseases in these two countries. Specifically, this paper juxtaposes the notion of Finnish Disease Heritage (FDH) with that of a 'Kashubian gene' in Poland.

Relational autonomy, care, and Jehovah's Witnesses in Germany.

Drawing from an ethics of care, relational approaches to autonomy have recently emerged in bioethics. Unlike individual autonomy with its emphasis on patients' rights, choice, and self-determination which has been the hallmark of bioethics consistent with the ideology of individualism in neoliberal democracies in Western countries, relational autonomy highlights the relatedness, interdependency, and social embeddedness of patients. By examining the mediating role that male Hospital Liaison Committee members in Germany play in facilitating care that supports Jehovah's Witnesses' refusal of blood transfusions, this article moves beyond 'dyadic relations' and contexts of caregiving.

Health care reform and Diagnosis Related Groups in Germany: The mediating role of Hospital Liaison Committees for Jehovah's Witnesses.

Resulting from health care reform in Germany that was implemented in 2003-2004, a new medical classification system called the "Diagnosis Related Groups" (DRGs) was introduced in hospitals. According to the media, social scientists, and a few physicians interviewed in this study the policy negatively transformed the German health care system by allowing the privatization of the hospital sector consistent with the neoliberal health care model. Allegedly, this privileged economic values over the quality of health care and introduced competition between hospitals.

Jehovah's Witness patients within the German medical landscape.

Blood transfusions belong to standard and commonly utilised biomedical procedures. Jehovah's Witnesses' transfusion refusals are often referred to in bioethical and medical textbooks. Members of this globally active religious organisation do not, however, challenge biomedical diagnosis and treatment as such.

Bioethics and religious bodies: refusal of blood transfusions in Germany.

The refusal of medical treatment is a recurrent topic in bioethical debates and Jehovah's Witnesses often constitute an exemplary case in this regard. The refusal of a potentially life-saving blood transfusion is a controversial choice that challenges the basic medical principle of acting in patients' best interests and often leads physicians to adopt paternalistic attitudes toward patients who refuse transfusion. However, neither existing bioethical nor historical and social sciences scholarship sufficiently addresses experiences of rank-and-file Witnesses in their dealings with the health care system.