*Apologies for cross-posting*
CFP American Anthropological Association 2021 Annual Meeting, Baltimore,
November 17-21, 2021
Session title: Anthropology and Knowledge Production in Rare Diseases
Organizers: Malgorzata Rajtar (Institute of Philosophy & Sociology,
Polish Academy of Sciences) & Eva-Maria Knoll (Institute for Social
Anthropology, Austrian Academy of Sciences)
Session abstract
Diversly defined and individually dispersed, rare diseases affect large
numbers of people in total; approx. 25-30 million and 30 million
inhabitants in the US and the EU respectively are considered to live
with a rare disease. Although a growing number of rare diseases have
been detected by newborn screening programs, the path to diagnosis for
thousands of others is often long and arduous. In the process of
diagnosis, rare diseases are often likened to zebras that are
infrequently discovered by physicians expecting more common diseases:
horses. Due to the small number of individuals living with a given rare
disease, randomized controlled trails and the standard "evidence-based"
approach to medicine more generally may not be available and/or fail to
provide conclusive evidence on rare disease treatment modalities and
orphan drugs. Anthropological critique of evidence-based medicine's
hegemony in "making authoritative knowledge claims in biomedicine"
(Colvin 2015; Adams 2013) seems to apply to rare disorders in
particular.
Inspired by the 2021 AAA Annual Meeting theme "Truth and
Responsibility," in this session, we seek papers that address the
production of knowledge and legitimacy in rare diseases. We are asking
what kind of knowledge is being produced? By whom? For what purposes?
How? Who is challenging this knowledge, its mode of production, and its
claim to relevance? Who is producing alternative truths and how are they
doing this? What is the relationship between biomedical, genetic,
technological, patient advocacy, and anthropological modes of knowledge
production in the case of rare diseases? What is the role of
anthropologists and other social scientists in the (co-)production of or
in challenging such knowledge and its legitimization? Finally, in what
ways has the COVID-19 pandemic influenced knowledge production,
dissemination, implementation, and/or power inequalities in the field of
rare conditions?
We encourage ethnographically grounded and theoretically inspired papers
that examine these issues while acknowledging the heterogenous,
constructed, and situated nature of medical knowledge (Burri and Dumit
2008) and daily practices in rare diseases.
Please send a 250-word paper proposal to Eva
(Eva-Maria.Knoll@oeaw.ac.at) and Malgorzata (mrajtar@ifispan.edu.pl) by
18 May. Deadline for General Call for Paper submissions in the AAA
portal: May 26, 2021.
--
Dr hab. Małgorzata Rajtar
Prof. IFiS/ Associate Professor
Instytut Filozofii i Socjologii PAN/ Institute of Philosophy &
Sociology, Polish Academy of Sciences
mrajtar@ifispan.edu.pl
Osrodek Badan Spolecznych nad Chorobami Rzadkimi/Rare Disease Social
Research Center
http://rdsrc.ifispan.pl/en/
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