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你会终止受镰状细胞病影响的妊娠吗?喀麦隆患者观点分析。

Would you terminate a pregnancy affected by sickle cell disease? Analysis of views of patients in Cameroon.

作者信息

Wonkam Ambroise, de Vries Jantina, Royal Charmaine D, Ramesar Raj, Angwafo Fru F

机构信息

Division of Human Genetics, Faculty of Health Sciences, University of Cape Town (UCT), Cape Town, South Africa Department of Medicine, University of Cape Town (UCT), Cape Town, South Africa.

Department of Medicine, University of Cape Town (UCT), Cape Town, South Africa.

出版信息

J Med Ethics. 2014 Sep;40(9):615-20. doi: 10.1136/medethics-2013-101392. Epub 2013 Aug 5.

Abstract

Sickle cell disease (SCD) is a debilitating illness that affects quality of life and life expectancy for patients. In Cameroon, it is now possible to opt for termination of an affected pregnancy (TAP) where the fetus is found to be affected by SCD. Our earlier studies found that, contrary to the views of Cameroonian physicians, a majority of parents with their children suffering from SCD would choose to abort if the fetuses were found to be affected. What have not yet been investigated are the views of people suffering from/living with SCD. We used a quantitative sociological method, with administered structured questionnaires, to study the attitudes of adult patients suffering from SCD on prenatal genetic diagnosis (PND) and possible TAP. The majority of the 89 participants were urban dwellers (84.3%), women (57.3%), Christian (95.5%) and single (90.9%), with a secondary/tertiary education (79.5%). The majority (89.2%) would consider PND for SCD; almost half (48.5%) would reject TAP while 40.9% would consider it. Respondents who rejected TAP claimed mostly ethical reasons (78.1%) while those who found TAP acceptable cited fear of having an affected child (88.9%) and the poor quality of the affected child's health (81.5%). Cameroonian patients with SCD are generally supportive of PND and a remarkably high number of patients living with SCD reported that they would consider terminating a pregnancy based on their assessment of the future well-being of the child. Research is required to investigate the burden of SCD on families and their quality of life.

摘要

镰状细胞病(SCD)是一种使人衰弱的疾病,会影响患者的生活质量和预期寿命。在喀麦隆,如果发现胎儿患有SCD,现在可以选择终止受影响的妊娠(TAP)。我们早期的研究发现,与喀麦隆医生的观点相反,如果发现胎儿受影响,大多数患有SCD孩子的父母会选择堕胎。尚未调查的是患有SCD的人的观点。我们采用定量社会学方法,通过发放结构化问卷,研究成年SCD患者对产前基因诊断(PND)和可能的TAP的态度。89名参与者中大多数是城市居民(84.3%)、女性(57.3%)、基督教徒(95.5%)且未婚(90.9%),接受过中等/高等教育(79.5%)。大多数人(89.2%)会考虑对SCD进行PND;近一半(48.5%)会拒绝TAP,而40.9%会考虑TAP。拒绝TAP的受访者大多声称是出于伦理原因(78.1%),而认为TAP可接受的受访者则提到担心生下患病孩子(88.9%)以及患病孩子健康质量差(81.5%)。喀麦隆的SCD患者总体上支持PND,而且相当多的SCD患者报告称,基于对孩子未来幸福的评估,他们会考虑终止妊娠。需要开展研究来调查SCD对家庭的负担及其生活质量。

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