Citizen science “from the margins”: epistemologies of ignorance in the Movement of Women with Endometriosis in Mexico

Abstract

ABSTRACT This paper analyzes, from the perspective of feminist epistemologies of ignorance, the case of Endometriosis México: an association of women with endometriosis that denounces different types of ignorance produced around their disease. I examine how the unveiling and analysis of the production of ignorance has become a central element of their struggle and the driving force behind the creation of new knowledge. This is a case of citizen science made “from the margins” that does not fit the typical citizen science instrumental or democratic discourse. In this sense, it proposes new directions for discussing public participation in science and technology. The work accounts for the process of production of ignorance identified by the Association in the light of three forms suggested by Nancy Tuana: (i) “knowing that we do not know, but not caring to know,” (ii) “we do not even know that we do not know,” and (iii) “they do not want us to know.” I propose a citizen science “from the margins” as a form of public participation in science and technology based on an epistemology of ignorance.