Middleton Anna
a Society and Ethics Research, Connecting Science , Wellcome Genome Campus, Cambridge.
New Bioeth. 2017 Apr;23(1):74-80. doi: 10.1080/20502877.2017.1314890.
Genomic and medical data sharing is pivotal if the promise of genomic medicine is to be fully realised. Social scientists working in the genomics arena ask the public 'how is the technology working for you?' Empirical studies on attitudes, values and beliefs are incredibly valuable; they offer a voice from those who are, or will be, directly affected. This is paramount if personalised medicine is to be truly personal. An International attitude study, Your DNA, Your Say, uses film to provide background information and an online survey to gather public views on donating one's own personal DNA and medical data for use by others. In this paper the rationale to the project is introduced together with an overview of the survey and film design. The project has been translated into multiple languages and the results will be used in policy for the Global Alliance for Genomics and Health.
如果要充分实现基因组医学的前景，基因组和医学数据共享至关重要。在基因组学领域工作的社会科学家向公众提问：“这项技术对你有怎样的作用？”关于态度、价值观和信念的实证研究极具价值；它们为那些正在或将会直接受到影响的人发声。如果个性化医疗要真正做到因人而异，这一点至关重要。一项国际态度研究“你的DNA，你的发言权”利用影片提供背景信息，并通过在线调查收集公众对于捐赠自己的个人DNA和医疗数据供他人使用的看法。本文介绍了该项目的基本原理以及调查和影片设计的概述。该项目已被翻译成多种语言，其结果将用于全球基因组与健康联盟的政策制定。
