Lay Constructions of Genetic Risk. A Case-study of the Polish Society of Huntington’s Disease

• Authors: Jan Domaradzki
• Languages of publication: EN

Abstracts

EN

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

EN

genetic risk; lay experts; right not to know; responsibility; the Polish Society of Huntington’s Disease

• Publisher: Polskie Towarzystwo Socjologiczne
• Journal: Polish Sociological Review
• Year: 2015
• Volume: 189
• Issue: 1
• Pages: 107-128

Dates

published

2015-03-30

Contributors

author

Jan Domaradzki

• Poznan University of Medical Sciences