Ariane Quintal is a doctoral candidate in bioethics at the Pragmatic Health Ethics Research Unit located at the Institut de recherches cliniques de Montréal (IRCM). She is concurrently enrolled as a doctoral student in bioethics at the Université de Montréal’s School of Public Health. Ariane holds a master’s degree in bioethics and a bachelor’s degree in neuroscience, also from the Université de Montréal. Her doctoral research project employs a participatory-action research approach inspired by a pragmatic ethics framework in addressing the morally problematic situations experienced by adults with rare diseases, their relatives, and clinicians who care for them within the province of Québec, Canada. This particular project will be developed in partnership with a working group, and will consist of two broad provincial consultations with members of the stakeholder groups previously outlined. The study will involve collecting testimonies, conducting follow-up interviews, conducting a Delphi survey, and developing strategies to mitigate some of the morally problematic situations identified throughout these steps. Ariane’s research is funded by doctoral scholarships from the Canadian Institutes of Health Research and the Fonds de recherche du Québec – Santé. Previously, Ariane’s master’s research project (also conducted at the Pragmatic Health Ethics Research Unit) explored the ethical and psychosocial issues raised by the artificial pancreas, a medical technology automating and integrating insulin infusions and glycaemic monitoring for people with type 1 diabetes.

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