METADAC

在我们对健康和社会的理解方面，一些最重要的进步是基于多年来从普通人那里收集信息(或数据)的研究研究。这些研究被称为纵向研究。英国在支持纵向研究方面有着独特的历史，一些研究早在20世纪30年代就开始了。纵向研究收集有关人们如何生活、他们的健康、幸福、教育以及他们的社会和自然环境的数据。有些还收集生物样本(如血液或尿液)，可对其进行处理，以获得有关遗传特征的数据(遗传学)。例如，这些研究向我们表明，怀孕期间吸烟会导致婴儿健康状况变差，遗传特征会影响糖尿病和高血压等健康状况。来自英国和世界各地的研究人员可以使用这些数据和纵向研究的样本来回答有关人类健康和福祉的重要问题。其中一些数据集合包含敏感信息，特别是在组合不同类型的数据或样本时。因此，对用于研究的数据和样本的获取受到限制。只有为公认的研究机构工作的合格研究人员才能使用这些数据或样本。独立委员会的存在是为了保护提供数据的人。METADAC项目运行这样一个独立委员会，批准研究人员访问英国纵向研究数据和样本的申请。METADAC根据世界各地的最佳实践和政策设计规则，以确保安全可靠地获取用于研究的数据和样本。METADAC还确保申请准入的过程是公平和透明的。METADAC包括科学、伦理、法律和临床实践方面的专家，他们了解为研究共享数据和样本的复杂性。METADAC还包括为纵向研究提供数据和样本的人(研究参与者)，以制定关于访问的规则并授予研究人员访问数据和样本的许可。METADAC已经成功地完成了三年的开发--2015至2018年。在其第二阶段(2018年至2020年)，该中心将继续为结合不同类型数据和使用样本的研究提供安全和公平的机会。METADAC将加强和推广其系统，以便更多的研究人员能够使用来自纵向研究的数据和样本来促进关于健康和社会的知识。作为安全使用数据和样本的承诺的一部分，METADAC还将与负责确保英国纵向研究数据和样本安全的其他组织密切合作。

Some of the most important advances in our understanding of health and society are based on research studies that have been collecting information (or data) from ordinary people over many years. These studies are called longitudinal studies. The UK has a unique history of supporting longitudinal studies, with some starting as long ago as the 1930s. Longitudinal studies collect data about how people live, their health, well-being, education, as well as their social and physical environments. Some also collect biological samples (e.g. blood or urine) which can be processed to obtain data about inherited characteristics (genetics). For example, these studies have shown us that smoking in pregnancy leads to poorer health in babies and that inherited characteristics can affect health conditions such as diabetes and high blood pressure.Researchers from the UK and around the world can use these data and samples from longitudinal studies to answer important questions about human health and wellbeing. Some of these data collections contain information that is sensitive, especially when different types of data or samples are combined. For this reason access to the data and samples for research is restricted. Only qualified researchers working for recognised research institutions can use these data or samples. Independent committees exist to safeguard the people who contributed the data. The METADAC project runs such an independent committee to approve applications from researchers to access data and samples from UK longitudinal studies. METADAC designs the rules for making sure that access to data and samples for research is safe and secure based on the best practice and policies from around the world. METADAC also ensures that the process of applying for access is fair and transparent. METADAC includes experts in science, ethics, law and clinical practice who have an understanding of the complexities of sharing data and samples for research. METADAC also includes people who provide data and samples for longitudinal studies (the study participants) in developing rules about access and in granting permission for researchers to access data and samples.METADAC has already successfully completed three years of development - 2015 to 2018. In its second phase (2018 to 2020) METADAC will continue to provide safe and fair access for research which combines different types of data and uses samples. METADAC will strengthen and promote its systems so that more researchers can use data and samples from longitudinal studies to advance knowledge about health and society. As part of its commitment to safe use of data and samples, METADAC will also work closely with other organisations who are charged with keeping the data and samples from UK longitudinal studies safe and secure.