Gray Ben
Department of Primary Health Care and General Practice, University of Otago, Wellington, P.O. Box 7343, Wellington South, 6021, New Zealand,
J Bioeth Inq. 2015 Jun;12(2):361-7. doi: 10.1007/s11673-015-9636-6. Epub 2015 May 28.
This paper discusses the Saudi Arabian case by Abdallah Adlan and Henk ten Have, published in a 2012 issue of the Journal of Bioethical Inquiry, regarding a congenitally disabled child enrolled in a research project examining the genetics of her condition. During the course of the study, her father was found not to be genetically related, and the case discussed the dilemma between disclosing to the family all findings as promised in consent documents or withholding paternity information because of the likely severe social repercussions. Using Adlan and ten Have's example, this paper proposes a framework to consider cases outside of the conventional bioethics frame of reference, splitting the bioethical task into three elements: understanding the problem from the patient's and the clinician's perspective and then engaging in dialogue to decide what to do next. The process of dialogue between affected parties is vital. Presuming that there is a common morality undermines the effectiveness of the dialogue needed to find a resolution.
本文讨论了阿卜杜拉·阿德兰和亨克·滕·哈夫发表于2012年《生物伦理探究杂志》上的关于沙特阿拉伯的案例,该案例涉及一名参与研究其病情遗传学项目的先天性残疾儿童。在研究过程中,发现她的父亲与她并无基因关联,该案例讨论了一个两难困境:是按照同意文件中的承诺向家人披露所有研究结果,还是因可能产生的严重社会影响而隐瞒亲子关系信息。本文以阿德兰和滕·哈夫的案例为例,提出了一个框架,以考虑传统生物伦理参考框架之外的案例,将生物伦理任务分为三个要素:从患者和临床医生的角度理解问题,然后进行对话以决定下一步该怎么做。受影响各方之间的对话过程至关重要。假定存在共同道德会削弱找到解决方案所需对话的有效性。