0000000000432123
AUTHOR
Aline Chassagne
Pourquoi la génétique humaine a-t-elle besoin des sciences humaines et sociales ?
L’introduction récente du séquençage haut débit du génome détermine une situation complexe marquée du sceau de l’accélération ; elle pose des problèmes éprouvés par les patients, les médecins ou les chercheurs à partir d’expériences de pratique clinique ou de recherche. Ces pratiques situées suscitent un besoin de réflexivité souvent difficile à assumer dans l’urgence de l’action et la segmentation encore forte des métiers. La Fédération Hospitalo-Universitaire (FHU) TRANSLAD Bourgogne Franche Comté constitue une structure pluridisciplinaire et plurielle pour encadrer l’arrivée du séquençage haut débit dans le soin. Ne préjugeant pas de ses objets, fonctions ou champs, elle se situe d’abord…
Secondary findings from whole-exome/genome sequencing evaluating stakeholder perspectives. A review of the literature
IF 2.004 (2017); International audience; With the development of next generation sequencing, beyond identifying the cause of manifestations that justified prescription of the test, other information with potential interest for patients and their families, defined as secondary findings (SF), can be provided once patients have given informed consent, in particular when therapeutic and preventive options are available. The disclosure of such findings has caused much debate. The aim of this work was to summarize all opinion-based studies focusing on SF, so as to shed light on the concerns that this question generate. A review of the literature was performed, focusing on all PubMed articles repo…
Mapping palliative care provision in European prisons
ObjectivesPrison populations around the world are ageing and numbers are rising, leading to greater demand for palliative care for prisoners approaching the end of life. This paper reports a survey that was undertaken by the European Association for Palliative Care Task Force on mapping palliative care provision for prisoners in Europe. The Task Force was established to begin to address the gap in research knowledge by exploring prison systems and care provision across different countries.MethodsThe survey, developed by the Task Force Steering Committee, consisted of 40 questions in six sections. It was completed through online searches; only data that were publicly available on the interne…
Prevalence and characteristics of prisoners requiring end-of-life care: A prospective national survey
Background: Ensuring adequate end-of-life care for prisoners is a critical issue. In France, data investigating the impact of laws allowing release of seriously ill prisoners are lacking. Aim: To assess the number and characteristics of prisoners requiring palliative care in French prisons. Design: A prospective, national survey collecting data over a 3-month period. Setting/participants: All healthcare units ( n = 190) providing care for prisoners in France. The prison population was 66,698 during the study period. Data collection concerned prisoners requiring end-of-life care, that is, with serious, advanced, progressive, or terminal illness and life expectancy <1 year. Results: Estima…