Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, Canada.
McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University, Baltimore, Maryland.
Hum Mutat. 2017 Oct;38(10):1281-1285. doi: 10.1002/humu.23278. Epub 2017 Jul 12.
The Matchmaker Exchange (MME) connects rare disease clinicians and researchers to facilitate the sharing of data from undiagnosed patients for the purpose of novel gene discovery. Such sharing raises the odds that two or more similar patients with candidate genes in common may be found, thereby allowing their condition to be more readily studied and understood. Consent considerations for data sharing in MME included both the ethical and legal differences between clinical and research settings and the level of privacy risk involved in sharing varying amounts of rare disease patient data to enable patient matches. In this commentary, we discuss these consent considerations and the resulting MME Consent Policy as they may be relevant to other international data sharing initiatives.
匹配器交换（MME）将罕见病临床医生和研究人员联系起来，以促进为了新基因发现而共享来自未确诊患者的数据。这种共享增加了找到两个或更多具有共同候选基因的类似患者的可能性，从而可以更方便地研究和理解他们的病情。MME 中数据共享的同意考虑因素包括临床和研究环境之间的伦理和法律差异，以及共享不同数量的罕见病患者数据以实现患者匹配所涉及的隐私风险水平。在这篇评论中，我们讨论了这些同意考虑因素以及由此产生的 MME 同意政策，因为它们可能与其他国际数据共享计划有关。
