一种在基因研究中从伦理角度处理偶发发现的框架。

A Framework to Ethically Approach Incidental Findings in Genetic Research.

作者信息

Beshir Lamis

机构信息

Department of Clinical Immunology, Sudan Medical Specialization Board, Khartoum, Sudan.

On behalf of the IFCC Task Force on Ethics (TF-E).

出版信息

EJIFCC. 2020 Nov 20;31(4):302-309. eCollection 2020 Nov.

DOI:
Abstract

With the advancement of science in the area of genetics and genomics, special ethical considerations should be taken in addition to the general ethical framework followed in research. Genetic research can reveal information about the susceptibility of an individual to disease and hence about his/her future health. Such information may be of interest and benefit to research participants, especially if preventive strategies exist. It may also expose them to other risks or anxieties when incidental findings that were not the primary scope of the study are found. Ethical guidelines acknowledge the duty of researchers to disclose incidental findings (IFs) to participants. In this review, we recommend four steps approach that researchers can use to disclose incidental findings: plan for IFs, discuss IFs in informed consent, identify and disclose IFs. Verification and identification of IFs should follow a categorical stratification based on the importance of the findings and the presence of a beneficial intervention to the participants.

摘要

随着遗传学和基因组学领域科学的进步,除了研究中遵循的一般伦理框架外,还应考虑特殊的伦理因素。基因研究可以揭示个体对疾病的易感性信息,从而了解其未来健康状况。这些信息可能会引起研究参与者的兴趣并对其有益,特别是如果存在预防策略的话。当发现并非研究主要范围的偶然发现时,也可能使他们面临其他风险或焦虑。伦理准则承认研究人员有向参与者披露偶然发现的责任。在本综述中,我们推荐研究人员可用于披露偶然发现的四步方法:为偶然发现制定计划、在知情同意中讨论偶然发现、识别并披露偶然发现。偶然发现的验证和识别应根据发现的重要性以及对参与者是否存在有益干预措施进行分类分层。

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