Helgesson Gert
Associate Professor in research ethics at Stockholm Centre for Healthcare Ethics, Department of Learning, Informatics, Management and Ethics at Karolinska Institutet in Stockholm, Sweden.
J Law Med Ethics. 2014 Spring;42(1):28-37. doi: 10.1111/jlme.12116.
This paper defends the right not to know personal health information, while it discards the right of research participants to receive individual research results. Disagreement regarding the right not to know stems from two different conceptions of autonomy, leading to opposing normative conclusions. Researchers occasionally have good reason to inform research participants about incidental findings in spite of the absence of a right to know such information. Such decisions have to be made by health care personnel and researchers on a case by case basis, although external support for the decisions may be available.
本文捍卫了不了解个人健康信息的权利，却摒弃了研究参与者获取个人研究结果的权利。关于不了解的权利的分歧源于两种不同的自主性概念，从而导致了相反的规范性结论。尽管研究参与者没有了解此类信息的权利，但研究人员偶尔有充分理由告知他们偶然发现的情况。此类决定必须由医护人员和研究人员根据具体情况做出，不过或许可以获得对这些决定的外部支持。
