The Social Consequences of Identifying a Genetic Disease with an Endogamous Ethnic Group: The Kashubian Case

Abstract

Development of genetics research has contributed to the detection of genetic diseases. One of them is the LCHAD enzyme deficiency, relatively common in the Kashubian population, and therefore by the media called the “Kashubian gene”. This article is a case study in which the social and cultural consequences of labelling a disease and problematising the ethnic nature of an illness are demonstrated. It is argued that a genetic disease can become a kind of stigma and spoiled identity, and that the collective identity created by biomedicalisation and geneticisation is either accepted, negotiated, or ignored because of its stigmatising properties. The biosociality built around the disease affects not only the carriers and their families, but also a wide range of people, who oppose the ethnic labelling of illness and the process of stigmatisation.