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Background: SMA type 1 is a severe neurodegenerative disorder that, in the absence of curative treatment, leads to death before 1 year of age without ventilatory support. Three innovative therapies are available to increase life expectancy. Purpose: (i) To increase knowledge about parents' experiences with their decision to have opted for an innovative therapy; (ii) to assess the middle-term psychological consequences in the parents' lives. Methods: We used an in-depth interview; a self-administrated questionnaire and self-report scales (BDI-II, STAI-Y, PSI-SF, SOC-13, PBA, DAS 16 and FICD). We compared parents hesitant before the decision to parents who were not-hesitant and the group of parents whose child was treated with gene therapy (GT) to parents whose child received another innovative therapy. Main results: We included n = 18 parents of 13 children. Parent's mean age was 34.7 (±5.2), child's average age was 44.3 months (±38.0). Retrospectively, most parents felt involved by doctors in decision-making on treatment, they felt their point of view was considered and were satisfied with the effects of the treatment. The group of parents "non-hesitant" was more depressed (p < 0.001), more anxious (p = 0.022) and had higher parental stress (p = 0.026) than the group of "hesitant" parents; the group of "GT-treated" parents was more depressed (p = 0.036) than the group of parents with "other therapy". Qualitative data highlights revealed: the need to save the child's life at all costs; the fear of coping with end of life and palliative care, the high value of perceived physician confidence in the treatment, the hope that the child will acquire autonomy or be cured. At the time of the decision, no parents felt they fully understood all of the issues regarding therapy and the disease. Conclusion: Hesitating before making a decision did not predispose parents to depression and anxiety. The narratives suggest that the parents faced a dilemma regarding their child's health in an urgent context. The decision was not final, and parents will continue to think about it throughout the care process.
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Fundamental research on ageing has taken an interesting turn in recent years with the rapid development of biomarkers predicting mortality in model organisms, particularly Drosophila, as well as in humans through improvements in approaches to the identification of circulating molecules in mass. These developments lead to a shift in our ability to predict the occurrence of death from the historically population level to the individual level. We question here the ethical, medical and social implications of this change of scale.
TITLE: Conséquences éthiques et sociales de biomarqueurs prédictifs de la mort chez l'homme - La vieillesse et la mort, problématiques comportementales et sociétales. ABSTRACT: La recherche fondamentale sur le vieillissement a pris un tour intéressant ces dernières années avec un développement rapide des biomarqueurs prédictifs de mortalité chez les organismes modèles, notamment la drosophile, ainsi que chez l'être humain à travers les améliorations des approches d'identification en masse de molécules circulantes. Ces développements conduisent à un déplacement de notre capacité de prédiction de survenue de la mort, du niveau historiquement populationnel au niveau individuel. Nous interrogeons ici les implications éthiques, médicales et sociales de ce changement d'échelle.
Assuntos
Bioética , Biomarcadores , Morte , Adulto , Idoso , Idoso de 80 Anos ou mais , Envelhecimento/patologia , Animais , Humanos , Longevidade/ética , Pessoa de Meia-Idade , Princípios Morais , Prognóstico , Mudança SocialRESUMO
BACKGROUND: The discovery of biomarkers of ageing has led to the development of predictors of impending natural death and has paved the way for personalised estimation of the risk of death in the general population. This study intends to identify the ethical resources available to approach the idea of a long-lasting dying process and consider the perspective of death prediction. The reflection on human mortality is necessary but not sufficient to face this issue. Knowledge about death anticipation in clinical contexts allows for a better understanding of it. Still, the very notion of prediction and its implications must be clarified. This study outlines in a prospective way issues that call for further investigation in the various fields concerned: ethical, psychological, medical and social. METHODS: The study is based on an interdisciplinary approach, a combination of philosophy, clinical psychology, medicine, demography, biology and actuarial science. RESULTS: The present study proposes an understanding of death prediction based on its distinction with the relationship to human mortality and death anticipation, and on the analogy with the implications of genetic testing performed in pre-symptomatic stages of a disease. It leads to the identification of a multi-layered issue, including the individual and personal relationship to death prediction, the potential medical uses of biomarkers of ageing, the social and economic implications of the latter, especially in regard to the way longevity risk is perceived. CONCLUSIONS: The present study work strives to propose a first sketch of what the implications of death prediction as such could be - from an individual, medical and social point of view. Both with anti-ageing medicine and the transhumanist quest for immortality, research on biomarkers of ageing brings back to the forefront crucial ethical matters: should we, as human beings, keep ignoring certain things, primarily the moment of our death, be it an estimation of it? If such knowledge was available, who should be informed about it and how such information should be given? Is it a knowledge that could be socially shared?