0000000000422099
AUTHOR
Elodie Cretin
Mort et handicap chez le nouveau-né et l’enfant : représentation et enjeux dans la société française
Resume Introduction Le developpement exponentiel de nouvelles techniques dans le domaine medical s’applique aussi aux patients en fin de vie, operant un changement dans les mentalites. La frequence et la maniere de mourir des enfants se sont modifiees tout comme la representation que l’on s’en fait. L’objectif de notre etude etait d’evaluer les enjeux et la representation de la mort du nouveau-ne et de l’enfant dans la societe francaise contemporaine ainsi que les determinants socioculturels pouvant les conditionner. Sujets et methode Il s’agit d’une etude qualitative descriptive par analyse thematique d’entretiens semi-diriges. Douze entretiens ont ete realises comprenant des experts en sc…
Genetic counselling difficulties and ethical implications of incidental findings from array-CGH: a 7-year national survey
Microarray-based comparative genomic hybridization (aCGH) is commonly used in diagnosing patients with intellectual disability (ID) with or without congenital malformation. Because aCGH interrogates with the whole genome, there is a risk of being confronted with incidental findings (IF). In order to anticipate the ethical issues of IF with the generalization of new genome-wide analysis technologies, we questioned French clinicians and cytogeneticists about the situations they have faced regarding IF from aCGH. Sixty-five IF were reported. Forty corresponded to autosomal dominant diseases with incomplete penetrance, 7 to autosomal dominant diseases with complete penetrance, 14 to X-linked di…
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…
"Card sorting" : a tool for research in ethics on treatment decision-making at the end of life in Alzheimer patients with a life threatening complication
Abstract Background End stage dementia is a particularly difficult aspect of care for patients with Alzheimer's disease and related dementias. In care institutions, caregivers and family are concerned by treatment decision-making for an acute life threatening complication occurring in Alzheimer patients at the end of life. How should the best treatment pathway be decided: to treat or not to treat? Which arguments are used for decision-making? These are mainly ethical questions which are currently difficult to express and investigate. Methods/Design Cross sectional multicentre study of clinical cases involving 67 health centres (university hospitals, general hospitals, local hospitals and ho…
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…