Academic journal article Polish Sociological Review

Lay Constructions of Genetic Risk. A Case-Study of the Polish Society of Huntington's Disease

Academic journal article Polish Sociological Review

Lay Constructions of Genetic Risk. A Case-Study of the Polish Society of Huntington's Disease

Article excerpt

Abstract: This article explores the lay constructions of genetic risk, the right not to know and the obligation to do a genetic test, know the risk and share genetic information with others. The study was carried out on 27 members of the Polish Society of Huntington's Disease. I describe their understanding of bioethics and their arguments for and against the right not to know. I argue that lay perceptions of the risk, rights and obligations mentioned above are shaped not only by the type of genetic disease involved but also depend on the social group to which it poses a threat and/or costs. Consequently, such obligations are framed toward: future generations, family members, society, the State and oneself. I also argue that genetics is turning families into bioethicists who, as lay experts, become one of the key players in the biomedicalization of society and bioethicization of genetic discourse.

Keywords: genetic risk, lay experts, right not to know, responsibility, the Polish Society of Huntington's Disease.

The links between sociology and biology can be traced back to the origins of that scientific discipline, when its founding-fathers emphasized the importance of biology for organization of society and human behaviour (Szczepañski 1969; Szczurkiweicz 1969; Piqtkowski and Skrzypek 2012). And while sometimes biology served only as a useful metaphor for describing social phenomena, when Durkheim and Spencer referred to society as an organism, frequently those links were more straightforward, as it was in the case of racial theories of de Gobineau, Galton, Pearson, Woltmann, Rosenberg, Chamberlain or Gumplowicz, who emphasized the importance of physiological and anatomical features, for the human individual and social life. Those links are further exemplified by such biological concepts of deviant and criminal behaviours as Lombroso's theory of 'born criminals', Sheldon's theory of body types or Jacob's and Witkin's extra Y chromosome theory. All these theories contributed to the nature-nurture debate and gave birth to the eugenic movement. Also, modern sociobiology stresses biological, i.e. genetic basis of personality traits and behaviours. Thus, it is worth to emphasize the importance of biology for sociology (Mazur 1978), and although nowadays it has shifted its point of reference from 'biology' to 'medicine' (Piqtkowski and Skrzypek 2012) still there can be observed an increased integration of knowledge on the social and biomedical, i.e. genetic factors determining human health.

On the other hand, as constant proliferation of genetic knowledge and application of new genetic technologies transcend their original formulations, sociologists emphasize social implications of genetics (Conrad and Gabe 1999; Nelkin and Tancredi 1989). Consequently, as genetics is one of the dominant paradigms of modern science, it becomes an important theme of sociological research (Conrad and Gabe 1999; Clarke and Tiscehurst 2006; Kerr 2004; Lock and Nguyen 2010). Thus, the most common topics related to new genetics studied by sociologists are: a new way in which health and disease are understood (Stemsey 2006) and a new way of understanding and experiencing pregnancy/parenthood (Lippman 1991; Rapp 2000; Rothman 1993) and the influence it has on transformation of social relations, including family and kinship (Atkinson, Parsons and Featherstone 2001; Featherstone, Atkinson, Bharadwaj and Clarke 2006; Finkler 2001; Konrad 2003; Sachs 2004). Moreover, as genetic risk becomes highly individualized (Boenink 2011; Hunt, Castañeda and De Voogd 2006; Svendsen 2006) sociologists focus their attention on the way genetics influences medical ethics and patient rights (Rhodes 1998; Shaw 1987; Takala 1999). All in all, the constant proliferation of genetic knowledge and the application of genetic technologies provoke claims of a geneticization of society (Lippman 1991).

The reason reasons being so, is that by providing new knowledge on a genetic basis of many diseases, personality traits and human behaviours genetics promotes a "new molecular ontology of life" (Rose 2007a) which stresses the molecular basis of human existence and relies on a neo-ontological concept of disease in a context of genetic reductionism. …

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