Search

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. The concept of FDH was developed by Finnish researchers in the 1970s; it encompasses almost forty rare hereditary diseases that are significantly more prevalent in Finland than elsewhere globally. On the other hand, the notion of the 'Kashubian gene' was first utilized by the media and some members of the Polish medical community around 2008. Based on 'unstable' data gathered during genetic research, the term referred to the high prevalence of a rare metabolic disorder (Long-Chain 3-Hydroxyacyl-CoA Dehydrogenase (LCHAD) deficiency) among Kashubians, an ethnic minority that resides in Northern Poland's Pomerania region. Whereas FDH facilitated the production and branding of 'a unique Finnish genetic identity' (Tupasela 2016b, 61), the notion of the 'Kashubian gene' has engendered health policy interventions targeting members of this ethnic minority and has contributed to stigmatizing practices carried out against Kashubians. [ABSTRACT FROM AUTHOR]

Polish birthrates during the state socialist period, 1948–1989, stayed above replacement level but since 1989 fell dramatically to one of the lowest in Europe, at 1.29 in 2010. The Polish Catholic Church and the newly-elected nationalist government of Lech Wałęsa reacted by escalating pronatalist rhetoric calling on women to increase childbearing in the name of economic and nationalist causes. Reflecting the renewed dominance of the Church, Wałęsa implemented restrictions on family planning, including abortion, contraception, and sex education, justifying them in moral and demographic terms. Plummeting fertility has been portrayed by the Church, media, and state as dangerous and unreasonable – a sign of Polish women's rejection of motherhood and the embrace of selfish priorities. Simultaneously however, the state cut back motherhood-friendly policies established by the socialist regime, including subsidized childcare, maternity leave, and healthcare. This paper draws on 19 months of fieldwork between 2000 and 2007, using interviews with 55 women in four healthcare clinics in Gdańsk area, and participant-observation at the social services offices in Krakow. This paper shows that far from irrational rejection of motherhood, Polish middle-class women are guided by pragmatic reasons when delaying parenthood in order to navigate the new political landscape marked by job insecurity and gendered discrimination in employment. Yet, rather than implementing work-family reconciliation policies that have stimulated fertility elsewhere in Europe, the Church and state insist on blaming women for ‘irrational’ non-reproduction, thus betraying a lack of political commitment to gender equity in employment, reproductive health, and in the family. [ABSTRACT FROM PUBLISHER]

This paper focuses on the diversity in patients' experience of biomedicine and contrasts it with the normative view characteristic of health professionals. Ethnographic fieldwork among Polish migrant women in London, Barcelona and Berlin included interviews about their experiences with local healthcare and health professionals. Themes drawn from the narratives are differences between the cities in terms of communication between patients and health professionals, respect for patients' choices and dignity, attitudes to pregnancy and birth (different levels of medicalization), and paediatric care. It is argued that patients continuously negotiate among their own views and expectations based on previous experiences and knowledge from personal communication; internet forums and publications; and the offer of medical services in the countries of their settlement. Patients experience pluralism of therapeutic traditions within and outside bio-medicine. In turn, representatives of bio-medicine are rarely aware of other medical practices and beliefs and this leads to various misunderstandings. By highlighting the pluralism of medical practices in European countries and the increasing mobility of patients, this case study has useful implications for medical anthropologists and health professionals in a broader Western context, such as raising sensitivity to different communication strategies and a diversity of curing traditions and expectations. [ABSTRACT FROM AUTHOR]

The paper addresses forms of medical pluralism, studied from the microsocial perspective, among the Polish community in Misiones, Argentina. It shows different attitudes to health treatment within the field of home medicine, local non-biomedical specialists and biomedicine. It points out the relationship between the diversity of offers of medical assistance and community members' negotiations between various medical approaches. It also identifies the factors influencing these choices. While prior research examines Indigenous and Mestizo medical ethnobotany in this region, there has not been research on medical pluralism and very little study of complementary and alternative medicine among the inhabitants of Misiones. The study group comprises Polish peasants who settled in northern Misiones between 1936 and 1938 and their descendants born in Argentina. Field research was based on semi-structured, indepth and free-listing interviews. The analysis was carried out using both qualitative and quantitative approaches. The results show that Polish settlers tried to reconstruct bits and pieces of their familiar and traditional healing practices in the new environment. Phytotherapy plays the most important role among home therapies. It is at home that most treatments start. Members of the Polish community also treat folk illnesses at home and report them to local healers. The growing influence of biomedicine does not contribute to the elimination of home medicine or non-biomedical specialists in the study area. There has been a medicalization of childbirth and fractures, but folk experts such as curanderos, hueseros and naturistas are still very popular in the region. [ABSTRACT FROM AUTHOR]