Kristman Vicki L, Kreiger Nancy
Department of Public Health Sciences, University of Toronto, Toronto, Ontario, Canada.
Ann Epidemiol. 2008 Apr;18(4):335-41. doi: 10.1016/j.annepidem.2007.10.003. Epub 2008 Feb 20.
The completion of the Human Genome Project has resulted in increased epidemiological research to identify genes and their products as risk factors for adverse health events. A parallel increase in ethical issues associated with genetic research is noted. One such issue is whether or not epidemiologists should disclose individual genetic results to research participants. Existing ethical guidelines and frameworks are not helpful for determining whether disclosure is the moral choice. The purpose of this paper was to develop a framework for use by epidemiologists, research ethics boards, and institutional review boards during the protocol development stage to ethically address the dilemma regarding disclosure of individual genetic information.
The core principles of research ethics were introduced and applied to the issues surrounding disclosure of genetic information. A principle-based framework was developed through analysis of the current ethical arguments for and against disclosure. Finally, examples demonstrating the use of the framework were provided.
The proposed framework will not solve all ethical dilemmas related to individual disclosure of genetic information. It is, however, a useful starting point to facilitate the consideration process.
人类基因组计划的完成促使流行病学研究增加，以确定基因及其产物作为不良健康事件的风险因素。与此同时，与基因研究相关的伦理问题也日益增多。其中一个问题是，流行病学家是否应向研究参与者披露个人基因检测结果。现有的伦理准则和框架无助于确定披露是否是道德选择。本文的目的是制定一个框架，供流行病学家、研究伦理委员会和机构审查委员会在方案制定阶段使用，以便从伦理角度解决有关披露个人基因信息的困境。
介绍了研究伦理的核心原则，并将其应用于围绕基因信息披露的问题。通过分析当前支持和反对披露的伦理观点，制定了一个基于原则的框架。最后，提供了说明该框架使用方法的示例。
所提出的框架并不能解决与个人基因信息披露相关的所有伦理困境。然而，它是促进思考过程的一个有用起点。
