Next-generation sequencing and global data sharing challenge many of the governance mechanisms currently in place to protect the privacy of research participants. These challenges will make it more difficult to guarantee anonymity for participants, provide information to satisfy the requirements of informed consent, and ensure complete withdrawal from research when requested. To move forward, we need to improve the current governance systems for research so that they are responsive to individual privacy concerns but can also be effective at a global level. We need to develop a system of e-governance that can complement existing governance systems but that places greater reliance on the use of technology to ensure compliance with ethical and legal requirements. These new governance structures must be able to address the concerns of research participants while at the same time ensuring effective data sharing that promotes public trust in genomics research.

中文翻译：

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基因组学研究中数据共享与隐私保护之间的紧张关系。

下一代测序和全球数据共享对目前保护研究参与者隐私的许多治理机制提出了挑战。这些挑战将使保证参与者的匿名性、提供满足知情同意要求的信息以及确保在被要求时完全退出研究变得更加困难。为了向前发展，我们需要改进当前的研究治理系统，以便它们能够对个人隐私问题做出回应，同时也可以在全球范围内发挥作用。我们需要开发一个电子政务系统，它可以补充现有的治理系统，但更加依赖技术的使用来确保遵守道德和法律要求。