HeLEX, Department of Public Health, University of Oxford, Oxford OX3 7LF, UK.
Annu Rev Genomics Hum Genet. 2012;13:415-31. doi: 10.1146/annurev-genom-082410-101454. Epub 2012 Mar 9.
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.
下一代测序和全球数据共享对目前用于保护研究参与者隐私的许多治理机制提出了挑战。这些挑战将使参与者的匿名性更难以得到保证，提供信息以满足知情同意的要求，以及在请求时确保完全退出研究变得更加困难。为了取得进展，我们需要改进目前的研究治理系统，以便既能应对个人隐私问题，又能在全球层面上发挥作用。我们需要制定一个电子治理系统，以补充现有的治理系统，但更依赖于技术的使用，以确保符合道德和法律要求。这些新的治理结构必须能够解决研究参与者的关切，同时确保有效的数据共享，以增强公众对基因组学研究的信任。
