Wykład gościny prof. dr. Aniki König

Serdecznie zapraszamy na wykład gościny prof. dr. Aniki König (FU Berlin) w dniu 4.11.2025. Wykład online odbędzie się w ramach serii wykładów pt. “Transition in Rare Diseases” organizowanych wspólnie przez Ośrodek Badań Społecznych nad Chorobami Rzadkimi przy IFiS PAN i Instytut Antropologii Społecznej Austriackiej Akademii Nauk.

Tytuł wykładu: “From Expert Patients to Patient Detectives: People with Rare Diseases‘ Involvement in the Production of Medical Knowledge.”

Data i miejsce: 4.11. 2025, 14:00-15:30 CET (online)
Zoom link: https://zoom.us/j/98558233602?pwd=nwdiv1kD13kROA6n2NmFXFzFB1D14C.1

Meeting ID: 985 5823 3602
Passcode: 525351

Abstrakt:

This lecture deals with the evolving role that adults with rare diseases assume in understanding their own condition and options for treatment and care. Drawing on the personal journey of an individual with the rare genetic condition Marfan Syndrome, this paper explores how growing access to research findings, self-help communities, and direct-to-consumer medical and genetic testing has given rise to a new patient figure: the patient detective. Expanding on the concept of ‘expert patients’—whose expertise is largely based on existing medical knowledge and reinforces the dominant value placed on biomedical professional expertise—patient detectives actively contribute to medical knowledge through methods that often diverge from conventional biomedical approaches. In this talk, I explore the transition from expert patients to patient detectives, with the goal of developing a novel perspective on patient agency in the context of rare diseases.

Bio:

Anika König is Interim Professor at the Institute for Social and Cultural Anthropology at Freie Universität Berlin. She holds a PhD in Anthropology from the Australian National University and an MA in Social and Cultural Anthropology from Freie Universität Berlin and in Sociology from Technische Universität Berlin. Positioned at the intersection of medical anthropology, science and technology studies, and gender studies, her research explores topics such as assisted reproductive technologies, genetic testing, and the lived experiences of individuals with rare and neglected diseases. Her work critically examines how scientific and biotechnological advancements intersect with social and cultural practices, shedding light on the complexities of medical technologies and the diverse ways in which people navigate them.

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