The Rare Disease Social Research Center (RDSRC) at the Institute of Philosophy and Sociology PAS and the research group of the project An Anthropology of Rare Diseases. A Study of the Baltic Sea Region invite social scientists, researchers in humanities, philosophy, and medical sciences as well as other academics and professionals interested in socio-cultural dimensions of medical issues, to participate in seminars:
“Society and Technologies on Health and Illness”.
The development of biomedical technologies and the medicalization of daily life suggest that an interdisciplinary analysis of social problems related to health, illness, and treatment is of paramount importance. The seminars will allow us to critically discuss these issues. Along with invited lectures, we are open to presentations based on work-in-progress research.
The seminars are coordinated by
29.10.2020, 15:00-16:30 CET – Dr Karoliina Snell (Docent, University of Helsinki), “‘Well, I knew this already’ – genetic risk information and narratives of health and illness”.
ABSTRACT – Several policies, strategies and research projects around the globe aim at providing personal genetic risk information for people to help them make good lifestyle choices and prevent onset of diseases. In 2014, a large-scale pilot project called GeneRISK was launched in Finland. The participants of GeneRISK received a personal risk score for having a cardiovascular event based on genetic analysis, lifestyle information and laboratory results. The project continued a long Finnish tradition of developing tools to estimate personal cardiovascular disease risk. In this talk, I present results from a focus group’s study conducted among participants of GeneRISK.
I argue that the genetic risk score provided little new information for the participants, as they were well aware of their family history and incorporated the risk scores easily to their existing narratives of personal health and illness. Instead of serving as an explanation for health and illness, which can help guide people’s lives and choices, the genetic risk information became an object of explanation for the participants. Therefore, the risk information did not create new conceptions of personal risk, nor did it generate new tools to push people to change their lifestyles. Instead, the risk information was used to strengthen their existing impression of personal risk.
Meeting link: https://us02web.zoom.us/j/89855870901?pwd=NmpMUHF5aUxoblNiNXVnZjZFajNJUT09
Meeting ID: 898 5587 0901
24.11.2020, 15:00-16:30 CET – Dr Eva-Maria Knoll (Austrian Academy of Sciences, Vienna), title: TBA
16.06.2020 – Magdalena Radkowska-Walkowicz (dr hab., University of Warsaw), “Hormon wzrostu i nadziei. Zespół Turnera w perspektywie antropologicznej” [“Hormone of growth and hope. Turner syndrome in an anthropological perspective”]
26.05.2020 – Ewa Głąb-Jabłońska (dr, Institute of Mother and Child, Warsaw), “Choroby rzadkie w badaniach przesiewowych noworodków w Polsce – stan aktualny i perspektywy” [“Rare diseases in the newborn screening panel in Poland – present state and perspectives”]
25.02.2020 – Maria Libura (University of Warmia and Mazury, Olsztyn), “Nierówności w zdrowiu” [“Health inequalities”]