Department of Obstetrics & Gynecology, Faculty of Medical Sciences, College of Medicine, University of Nigeria, Ituku-Ozalla Campus, PMB 01129, Enugu State, 400001, Nigeria.
Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD, 20892-1156, USA.
BMC Med Ethics. 2019 May 29;20(1):37. doi: 10.1186/s12910-019-0376-8.
Sickle cell anemia (SCA) is a major genetic disease with the greatest burden in sub-Saharan Africa. To try to help reduce this burden, some churches in Nigeria conduct premarital sickle cell hemoglobin screening and refuse to conduct weddings when both individuals are identified as carriers of sickle cell trait.
This paper explores the ethical challenges involved in such denials. We assess whether churches have the right to decline to marry adults who understand the risks and still prefer to get married, and whether couples should be denied church weddings based on the risk that their child may suffer from sickle cell anemia. We examine the moral and ethical dimensions of such denials and explore the underlying socio-cultural context involving the purpose of marriage and the meaning of the wedding ceremony in societies where premarital screening is one of the few tools available to reduce the risk of having children with SCA. The potential role of the church is also examined against the background of church beliefs, the duty of the church to its members and its role in reducing the suffering of its members and /or their children.
We argue that the church should impose these burdens on couples only if doing so promotes a sufficiently compelling goal and there is no less burdensome way to achieve it. We then argue that the goal of reducing the number of individuals in Nigeria who have SCA is compelling. However, testing earlier in life offers a less burdensome and potentially even more effective means of achieving this goal. This suggests that, advocating for earlier screening and helping to support these programs, would likely better promote the church's own goals of helping its parishioners, increasing the number of church weddings, and reducing the burden of SCA in Nigeria.
镰状细胞贫血症(SCA)是一种主要的遗传疾病,在撒哈拉以南非洲地区负担最重。为了努力减轻这种负担,尼日利亚的一些教堂在婚前进行镰状细胞血红蛋白筛查,如果两个人都被确定为镰状细胞特征携带者,就拒绝举行婚礼。
本文探讨了这种拒绝行为所涉及的伦理挑战。我们评估了教堂是否有权拒绝与理解风险但仍选择结婚的成年人结婚,以及是否应该根据其子女可能患有镰状细胞贫血症的风险拒绝在教堂举行婚礼。我们考察了这种拒绝的道德和伦理维度,并探讨了在婚前筛查是降低生育镰状细胞贫血症儿童风险的少数手段之一的社会中,涉及婚姻目的和婚礼仪式意义的潜在社会文化背景。还考察了教会在教会信仰、教会对其成员的责任以及在减轻其成员及其/或其子女痛苦方面的作用背景下的潜在作用。
我们认为,只有在这样做促进了一个足够有说服力的目标,并且没有减轻负担的方法来实现这个目标的情况下,教会才应该将这些负担强加给夫妇。然后,我们认为减少尼日利亚患有 SCA 的人数的目标是有说服力的。然而,更早地进行检测提供了一种负担较轻且潜在更有效的实现这一目标的手段。这表明,倡导更早的筛查,并帮助支持这些项目,可能更有助于促进教会自身的目标,即帮助其教区居民,增加教堂婚礼的数量,并减轻尼日利亚 SCA 的负担。