Ethical and Epistemic Entanglements of Person-Centred Epidemiological Measures
Leah McClimans, Associate Professor of Philosophy, University of South Carolina
La conférence est co-organisée avec le Réseau montréalais de philosophie des sciences, l‘Institute for Health and Social Policy (McGill University), la Chaire de recherche du Canada en philosophie des sciences de la vie, la Chaire ÉSOPE de philosophie de l’Université de Montréal, l’Université Concordia et le Centre de recherche interuniversaire sur la science et la technologie (CIRST).
Since the 1970s epidemiological measures focusing on “quality of life” have figured increasingly as endpoints in clinical trials. In this talk I begin by examining the history of these measures, which were later relabeled “patient-reported outcome measures” or PROMs. The ability of these measures to faithfully report patient concerns and/or quality of life has been contested for much of their history. I will argue that this ethical concern is linked to epistemic concerns about the validity, interpretability and responsiveness of these measures. I will suggest that researchers cannot put the ethical question to one side and move forward with the methodological and epistemic ones.