Lay Constructions of Genetic Risk. A Case-study of the Polish Society of Huntington’s Disease
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Poznan University of Medical Sciences
Publication date: 2015-03-30
Polish Sociological Review 2015;189(1):107-128
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.
I wish to thank the two anonymous referees for their constructive and insightful suggestions for the improvement of the earlier draft of this paper. I would also like to express my gratitude to Ms Danuta Lis, president of the Polish Society of Huntington’s Disease, and Ms Marianna Klimontonowicz who invited me to the XIV Annual Meeting of the Polish Society of Huntington’s Disease and helped with collecting the data. I thank professor Anna Latos-Bieleńska and doctor Karolina Matuszewska for their helpful comments on the case studies. Last but not least, I wish to thank all the family members who participated in the study.
This research was a part of a project: Social implication of a new genetics. Genetics, ethics and identity funded by the Faculty of Health Sciences, Poznan University of Medical Sciences.Grant No. 502-14-04406512-08496.
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