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制定志愿者注册登记制度:管理个人信息保护问题的关键原则。

Developing registries of volunteers: key principles to manage issues regarding personal information protection.

机构信息

Centre of Genomics and Policy, Faculty of Medicine, Department of Human Genetics, McGill University, Montréal, QC, Canada.

出版信息

J Med Ethics. 2010 Nov;36(11):712-4. doi: 10.1136/jme.2010.036715. Epub 2010 Sep 29.

DOI:10.1136/jme.2010.036715
PMID:20880892
Abstract

Much biomedical research cannot be performed without recruiting human subjects. Increasingly, volunteer registries are being developed to assist researchers with this challenging task. Yet, volunteer registries raise confidentiality issues. Having recently developed a registry of volunteers, the authors searched for normative guidance on how to implement the principle of confidentiality. The authors found that the protection of confidentiality in registries are based on the 10 key elements which are elaborated in detail in the Canadian Standards Association Model Code. This paper describes how these 10 detailed key principles can be used during the developmental stages of volunteer registries.

摘要

许多医学研究都离不开招募人体受试者。为了帮助研究人员完成这一具有挑战性的任务,志愿者注册系统逐渐发展起来。然而,志愿者注册系统引发了保密性问题。作者最近开发了一个志愿者注册系统,他们在寻找关于如何实施保密性原则的规范指导。作者发现,注册系统中的保密性保护基于加拿大标准协会模式准则中详细阐述的 10 个关键要素。本文描述了在志愿者注册系统的开发阶段如何使用这 10 个详细的关键原则。

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