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
24.11.2020, 15:00-16:30 CET – Dr Eva-Maria Knoll (Austrian Academy of Sciences, Vienna), “Haemoglobinopathies and Remoteness: Treatment and Prevention in the Maldives and Austria”.
ABSTRACT – With an estimated 7% of the world population as carriers of a genetic mutation of the red blood cell, haemoglobinopathies rank among the most common genetic diseases. Yet carrier prevalence as well as targeted programs to fight these autosomal recessive blood disorders are unevenly distributed. With a stronghold of thalassaemia in Asia and sickle cell disease in Africa, the majority of patients is born in low-income countries of the tropical and subtropical world. Due to human mobility, however, haemogobinopathies have transformed into a global health challenge. Within the last decade central and northern Europe also faced rising case numbers.
Alarming cost-benefit analyses predicting a proliferation of care-intensive patients and an overwhelming burden for healthcare systems led to the development of targeted national programs for clinical management and prevention. While the Western world introduced the first national haemoglobinopathy programs in the 1960/70s, governments of particularly affected countries in the Global South are still struggling with their implementation. In this talk I will compare the Maldives as a region of high prevalence with Austria, where haemoglobinopathies rank as rare diseases. Drawing on the concepts of remoteness (Ardener 1987), genetic responsibility (Novas & Rose 2000) and biosociality (Rabinow 1996; Gibbon & Novas 2008) I will shed some new light on different forms of remoteness in relation to geography, genes and human agency.
Join Zoom Meeting: https://us02web.zoom.us/j/83533316612?pwd=NndmY1g2MEVkdUxhVnZ6UXlaUGxnQT09
Meeting ID: 835 3331 6612
15.12.2020, 14:30-16:00 CET – Prof. Christian Munthe (University of Gothenburg), “The ethics of screening for rare disease”.
25.02.2021, 14:00-15:30 CET – Prof. Mette Bech Risør (The Arctic University of Norway), title: TBA
29.10.2020 – Dr Karoliina Snell (Docent, University of Helsinki), “‘Well, I knew this already’ – genetic risk information and narratives of health and illness”.
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”]