Ubuntu philosophy and the consensus regarding incidental findings in genomic research: a heuristic approach
Ubuntu philosophy and the consensus regarding incidental findings in genomic research: a heuristic approach
复制标题
DOI：
10.1007/s11019-020-09953-4
复制
发表时间：
2020-04-25
影响因子：
2.1
通讯作者：
Ewuoso, Cornelius
中科院分区：
文献类型：
--
作者：
Ewuoso, Cornelius
本研究采用了启发式的技术，认为一套规范植根于非洲哲学的Ubuntu可以有效地补充目前的研究指导方针，处理偶然发现的基因组研究。关于偶然发现的共识是，有道德义务返回符合分析和临床有效性阈值的个体遗传偶然发现，具有临床实用性，并且是可操作的，前提是研究贡献者没有选择退出接收此类信息。这项研究概述了可能阻碍这一共识在主流临床实践中的整合的障碍，并展示了如何从全球南部的伦理理论可能被用来解决同样的问题。这将推动个性化医疗的伦理、法律的和社会问题领域的发展，使人们了解非洲对基因组学的伦理、法律的和社会问题的看法。
This study adopts a heuristic technique to argue the thesis that a set of norms rooted in the African philosophy of Ubuntu can usefully supplement current research guidelines for dealing with incidental findings discovered in genomic research. The consensus regarding incidental findings is that there is an ethical obligation to return individual genetic incidental findings that meet the threshold of analytic and clinical validity, have clinical utility, and are actionable, provided that research contributors have not opted out from receiving such information. This study outlines the hurdles that may hinder the integration of this consensus in mainstream clinical practice, and shows how an ethical theory from the global south may be used to address the same. This will advance the field of ethical, legal and social issues of personalized medicine by providing exposure to the under-represented African perspective on the ethical, legal, and social issues of genomics.