Publications by authors named "Emmanuelle Fillion"

From 1941, the synthetic oestrogen diethylstilbestrol (DES) was administered to millions of women around the world to prevent miscarriages. In 1971, a clear and direct link was shown between taking DES during pregnancy and its subsequent long-term morbid effects on offspring. In the last 50 years, the list of side effects of in-utero exposure to DES has grown to include cancer, infertility, significant prematurity and urogenital malformation, amongst others.

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After being victims of a serious iatrogenous damage, what kind of relationship can patients rebuild with the world of medicine? In this article, I examine this question in terms of the contaminated blood affair in France. Using a qualitative study of haemophiliac patients and their families as a base, I looked at the changes in their modes of commitment to medicine, from the period preceding contamination with AIDS through blood transfusion, until the present day. It would seem that the experience of iatrogenous injustice was at the root of a major reconfiguration: all of the patients looked back over their trajectories, examined their relationship with the medical world and changed their positions, but without necessarily drawing the same conclusions or taking the same stances.

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Objective: This article looks at how users and doctors in France have rethought the question of shared decision-making in the clinical field of haemophilia following a major crisis - that of the infected blood affair.

Design: We did a qualitative survey based on semi-structured interviews in three regions of France.

Setting And Participants: The interviews covered 31 clinical doctors of haemophilia and 31 users: 21 adult males with severe haemophilia (21/31), infected (14/21) or not (7/21) with HIV, the infected wife of one of the latter (1/31) and nine parents of young patients with severe haemophilia (9/31), either HIV positive (6/9) or negative (3/9).

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