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Public Health Genomics. 2016;19(5):298-306. doi: 10.1159/000448914. Epub 2016 Sep 10.
2
How sickle cell disease patients experience, understand and explain their pain: An Interpretative Phenomenological Analysis study.镰状细胞病患者如何体验、理解和解释他们的疼痛:一项解释现象学分析研究。
Br J Health Psychol. 2016 Feb;21(1):190-203. doi: 10.1111/bjhp.12157. Epub 2015 Sep 2.
3
How people in Benin assess a couple's risk of having a baby with sickle cell disease.贝宁人如何评估夫妻生育患有镰状细胞病婴儿的风险。
J Community Genet. 2015 Jan;6(1):77-82. doi: 10.1007/s12687-014-0205-1. Epub 2014 Nov 25.
4
Premarital screening programmes for haemoglobinopathies, HIV and hepatitis viruses: review and factors affecting their success.血红蛋白病、艾滋病毒和肝炎病毒的婚前筛查项目:综述及影响其成功的因素
J Med Screen. 2009;16(1):22-8. doi: 10.1258/jms.2008.008029.
5
Infertility and the provision of infertility medical services in developing countries.发展中国家的不孕症及不孕症医疗服务的提供
Hum Reprod Update. 2008 Nov-Dec;14(6):605-21. doi: 10.1093/humupd/dmn042. Epub 2008 Sep 26.
6
Revisiting Wilson and Jungner in the genomic age: a review of screening criteria over the past 40 years.基因组时代对威尔逊和荣格纳标准的再审视:过去40年筛查标准综述
Bull World Health Organ. 2008 Apr;86(4):317-9. doi: 10.2471/blt.07.050112.
7
Premarital screening for thalassemia and sickle cell disease in Saudi Arabia.沙特阿拉伯的地中海贫血和镰状细胞病婚前筛查。
Genet Med. 2007 Jun;9(6):372-7. doi: 10.1097/gim.0b013e318065a9e8.
8
The psychological trauma of infertility in Nigeria.尼日利亚不孕症带来的心理创伤。
Int J Gynaecol Obstet. 2004 Feb;84(2):178-80. doi: 10.1016/S0020-7292(03)00316-3.
9
Impact of infertility on marital life in Nigeria.
Int J Gynaecol Obstet. 2002 Oct;79(1):61-2. doi: 10.1016/s0020-7292(02)00180-7.
10
'Men leave me as I cannot have children': women's experiences with involuntary childlessness.“男人因我无法生育而离开我”:女性非自愿无子女的经历
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基于血红蛋白基因型拒绝在教堂举行婚礼:来自尼日利亚东南部埃努古的伦理问题。

Ethical issues in denial of church wedding based on couple's hemoglobin genotype in Enugu, south eastern Nigeria.

机构信息

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.

出版信息

BMC Med Ethics. 2019 May 29;20(1):37. doi: 10.1186/s12910-019-0376-8.

DOI:10.1186/s12910-019-0376-8
PMID:31142291
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6542068/
Abstract

BACKGROUND

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.

MAIN BODY

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.

CONCLUSION

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.

摘要

背景

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。

主要内容

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。

结论

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。