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伊斯法罕遗传咨询中心的近亲婚姻及临床咨询中的伦理问题

Consanguineous marriages in the genetic counseling centers of Isfahan and the ethical issues of clinical consultations.

作者信息

Nouri Narges, Nouri Nayereh, Tirgar Samane, Soleimani Elham, Yazdani Vida, Zahedi Farzaneh, Larijani Bagher

机构信息

Tohid Genetic Counseling Center, Isfahan, Iran.

Genetic Laboratory of Al- Zahra Hospital, Isfahan University of Medical Sciences, Isfahan, Iran.

出版信息

J Med Ethics Hist Med. 2017 Dec 10;10:12. eCollection 2017.

PMID:29416832
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5797678/
Abstract

Consanguineous marriage, which is common in many regions in the world, has absorbed much attention as a causative factor in raising the incidence of genetic diseases. The adverse effects may be attributed to the expression of the genes received from common ancestors and mortality and morbidity of the offspring. Iran has a high rate of consanguineous marriages. In recent years genetic counseling has come to be considered in health care services. This cross-sectional study was conducted in order to determine the prevalence and types of consanguineous marriages in the genetic clinics in Isfahan. We aimed to define the different types of marriages, specific categories of genetic disorders associated with consanguineous marriages, and mode of inheritance in the family tree. We also narratively reviewed the ethical aspects of the issue. The data were collected using a simple questionnaire. A total number of 1535 couples from urban and rural areas formed the study population. The marriages were classified according to the degree of the relationship between couples, including: double cousin, first cousin, first cousin once removed, second cousin and beyond second cousin. The SPSS software version 16 was used for data analysis. Data obtained through genetic counseling offered during a 5-year period revealed that 74.3% had consanguineous relationships, 62.3% were first cousins, 1% were double cousins and 7.8% were second cousins. In addition, 76% of the couples had at least one genetic disease in their family tree. Related ethical issues were also considered in this study, including autonomy and informed decision making, benefit and harm assessment, confidentiality, ethics in research, justice in access to counseling services, financial problems ethics, and the intellectual property of scientific success.

摘要

近亲结婚在世界许多地区都很常见,作为导致遗传疾病发病率上升的一个因素,它备受关注。其不良影响可能归因于从共同祖先那里继承的基因的表达以及后代的死亡率和发病率。伊朗近亲结婚率很高。近年来,遗传咨询已被纳入医疗保健服务中加以考虑。这项横断面研究旨在确定伊斯法罕遗传诊所中近亲结婚的患病率和类型。我们旨在界定不同类型的婚姻、与近亲结婚相关的特定遗传疾病类别以及家谱中的遗传方式。我们还对该问题的伦理方面进行了叙述性综述。数据通过简单问卷收集。来自城乡地区的总共1535对夫妇构成了研究人群。婚姻根据夫妻之间的亲属关系程度进行分类,包括:双重表亲、一级表亲、隔一代的一级表亲、二级表亲及二级表亲以上。使用SPSS 16版软件进行数据分析。通过为期5年的遗传咨询所获得的数据显示,74.3%的夫妇有近亲关系,62.3%是一级表亲,1%是双重表亲,7.8%是二级表亲。此外,76%的夫妇的家谱中至少有一人患有遗传疾病。本研究还考虑了相关伦理问题,包括自主权和知情决策、利弊评估、保密、研究伦理、咨询服务获取的公正性、财务问题伦理以及科研成果的知识产权。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0553/5797678/cf84c92c2dae/JMEHM-10-12-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0553/5797678/cf84c92c2dae/JMEHM-10-12-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0553/5797678/cf84c92c2dae/JMEHM-10-12-g001.jpg

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