Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
Dev World Bioeth. 2010 Aug;10(2):104-10. doi: 10.1111/j.1471-8847.2010.00276.x. Epub 2010 Feb 25.
Our claim in this paper is that not being identified as the data source might cause harm to a person or group. Therefore, in some cases the default of anonymisation should be replaced by a careful deliberation, together with research subjects, of how to handle the issues of identification and confidentiality. Our prime example in this article is community participatory research and similar endeavours on indigenous groups. The theme, content and aim of the research, and the question of how to handle property rights and ownership of research results, as well as who should be in charge of the research process, including the process of creating anonymity, should all be answered, before anonymity is accepted.
我们在本文中的主张是,未被识别为数据源可能会对个人或群体造成伤害。因此,在某些情况下,应该用一种仔细的审议取代匿名化的默认做法,这种审议应该与研究对象一起,讨论如何处理识别和保密问题。在本文中,我们的主要例子是社区参与式研究和对土著群体的类似努力。研究的主题、内容和目的,以及如何处理研究成果的产权和所有权问题,以及谁应该负责研究过程,包括创建匿名的过程,都应该在接受匿名之前得到回答。