Managing misaligned paternity findings in research including sickle cell disease screening in Kenya: 'consulting communities' to inform policy.
Managing misaligned paternity findings in research including sickle cell disease screening in Kenya: 'consulting communities' to inform policy.
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DOI：
10.1016/j.socscimed.2013.07.028
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发表时间：
2013-11
影响因子：
5.4
通讯作者：
Parker, Michael
中科院分区：
文献类型：
--
作者：
Marsh, Vicki;Kombe, Francis;Fitzpatrick, Ray;Molyneux, Sassy;Parker, Michael
关键词：
对不一致的亲子鉴定结果的处理在世界范围内引起了重要的争议。然而，这主要是在高收入国家的背景下讨论的。遗传学和基因组学研究有可能显示不一致的亲子关系，在非洲越来越普遍。在肯尼亚进行的一项基因组学研究中，在检测和分享有关父亲镰状细胞病状况的信息方面出现了一个难题。这种困境可能是在许多研究和卫生保健环境中分享不一致的亲子鉴定结果的挑战的典范。使用审议的方法，社区咨询，为研究实践提供信息，我们探讨了居民的意见，父亲的测试和共享不一致的亲子关系信息。2009年12月至2010年11月，基利菲县的63名居民参与了知情的审议小组讨论，其结构是为了支持小组内的规范性反思，有目的地选择探索多样性。分析依据的是经修改的框架分析方法，借鉴了相关的社会科学和生物伦理学文献。这些方法促使个人和群体对道德上重要的问题进行深入的思考，并揭示了观点和价值观的广泛多样性。围绕家庭利益和开放的重要性，出现了基本的和相互冲突的价值观，其基础是对婚姻不忠和隐瞒真相的道德影响的分歧。对这些辩论中出现的伦理问题进行更广泛的考虑支持了当地的推理，即在这种情况下不应进行父亲镰状细胞检测，而不是认为检测应在有或没有披露不一致的亲子关系信息的情况下进行。研究结果强调了促进对受影响儿童的家庭成员进行更广泛测试的重要性，这取决于管理这种遗传性疾病的国家政策的制定和实施。它们的丰富性也说明了本研究报告所采用的方法在加强社区协商方面的潜力。肯尼亚关于不一致的父权的社区协商突出了道德上重要的多样性。公开性和家庭利益是关于不一致的父权的辩论中相互冲突的核心价值观。在研究中，父亲对镰状细胞病检测的要求产生了令人望而却步的道德挑战。知情的审议小组讨论加强了社区协商的道德成果。
The management of misaligned paternity findings raises important controversy worldwide. It has mainly, however, been discussed in the context of high-income countries. Genetic and genomics research, with the potential to show misaligned paternity, are becoming increasingly common in Africa. During a genomics study in Kenya, a dilemma arose over testing and sharing information on paternal sickle cell disease status. This dilemma may be paradigmatic of challenges in sharing misaligned paternity findings in many research and health care settings. Using a deliberative approach to community consultation to inform research practice, we explored residents' views on paternal testing and sharing misaligned paternity information. Between December 2009 and November 2010, 63 residents in Kilifi County were engaged in informed deliberative small group discussions, structured to support normative reflection within the groups, with purposive selection to explore diversity. Analysis was based on a modified framework analysis approach, drawing on relevant social science and bioethics literature. The methods generated in-depth individual and group reflection on morally important issues and uncovered wide diversity in views and values. Fundamental and conflicting values emerged around the importance of family interests and openness, underpinned by disagreement on the moral implications of marital infidelity and withholding truth. Wider consideration of ethical issues emerging in these debates supports locally-held reasoning that paternal sickle cell testing should not be undertaken in this context, in contrast to views that testing should be done with or without the disclosure of misaligned paternity information. The findings highlight the importance of facilitating wider testing of family members of affected children, contingent on the development and implementation of national policies for the management of this inherited disorder. Their richness also illustrates the potential for the approach adopted in this study to strengthen community consultation. Community consultation on misaligned paternity in Kenya highlights morally important diversity. Openness and family interests are central conflicting values in debates on misaligned paternity. In research paternal requests for sickle cell disease testing generate prohibitive moral challenges. Informed deliberative group discussions strengthen ethical outcomes of community consultation.
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影响因子：
1.9
作者：
Abma, Tineke A.;Molewijk, Bert;Widdershoven, Guy A. M.
通讯作者：
Widdershoven, Guy A. M.
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影响因子：
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通讯作者：
Draper, Heather
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影响因子：
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通讯作者：
Draper, Heather