Społeczno-kulturowe wymiary chorób rzadkich: przypadek niedoboru LCHAD. Porównawcze studium przypadku Polski i Finlandii

Numer grantu: 2015/17/B/HS3/00107

Okres / Czas trwania: 01.2016-07.2019

Finansowanie: National Science Center (OPUS 9)

Kierownik projektu: Małgorzata Rajtar

Badacze: Anna Kwaśniewska, Anna Chowaniec

This is a three-year project based at the Department of Ethnology and Cultural Anthropology at the Adam Mickiewicz University in Poznań, Poland. The project has three objectives. First, it aims at examining experiences of adult patients and families of children with a rare, genetic disease called Long-Chain 3-Hydroxyacyl-CoA Dehydrogenase Deficiency (LCHADD) as a case study for other rare, “orphan” diseases prevalent in Poland (especially in the Pomerania region) and Finland. Second, it aims at analyzing entanglements of diverse agents, such as patients with LCHADD who undergo dietary and medical treatment, their families, their physicians, and medical institutions. Third, by attending to processes of “geneticization” (Lippman 1991), the project seeks to examine how people make sense of genes and incorporate them into “older” cultural categories, such as “blood” and “curse” that have been ascribed to their social and group identities. The project aims at comparing two regions—Pomerania in Poland and southern Finland—that have been singled out by genetic researchers due to their biological similarity. By utilizing ethnographic and archival research methods, it goes, however, beyond medical definitions. The project argues that establishing "carrier frequency" and biomedical symptoms of rare diseases does not account for daily experiences and problems of patients and/or families with children who have LCHADD. Neither does it tell us how individuals, communities, and the state “redefine biological findings into potent cultural idioms” (Wailoo 2007: 671). Furthermore, biomedical definitions tend to overlook culturally and politically ambivalent issues of genes and genetic research on rare diseases in contemporary societies.


Chowaniec-Rylke, A. 2016. Choroby rzadkie - perspektywa antropologiczna. In: Oblicza choroby w czasach płynnej nowoczesności. E. Nowina-Sroczyńska, S. Latocha, & T. Siemieński (eds.), pp. 111-127. Bytów-Łódź.

Chowaniec-Rylke, A. 2018. Nigdy do końca zdrowi, nigdy dość chorzy. Doświadczenia rodziców dzieci chorych na LCHADD. W: Dzieci i zdrowie. Wstęp do childhood studies. M. Radkowska-Walkowicz & M. Reimann (eds.). Warsaw: Oficyna Naukowa.

Kwaśniewska, A. 2017. Choroba genetyczna jak o klątwa. Analiza i kontekst dyskursu medialnego dotyczącego tzw. genu kaszubskiego. Lud 101: 231-251. http://apcz.umk.pl/czasopisma/index.php/LUD/article/view/lud101.2017.07/14480

Rajtar, M. 2017. O (nie)naturalności jedzenia. Pokarmy i technologie biomedyczne w chorobach metabolicznych. Lud 101: 383-400. http://apcz.umk.pl/czasopisma/index.php/LUD/article/view/lud101.2017.13/14486

Rajtar, M. 2019. Normalised Eating and Dietary Guidelines in LCHAD Deficiency. Ethnologia Polona 40: 91-108. >>>