Information Accountability for Advanced Research Data Management

为了在协作研究环境中实现数据密集型研究的全部潜力，需要通过开发足够的技术解决方案来解决一些挑战。挑战的核心是数据收集、存储、转换和共享中的信息隐私，特别是当研究数据来自人类活动和健康记录时。为了应对这些挑战，该研究计划的长期目标是显着提高对信息隐私的认识，并开发方法来解决数据密集型研究背景下两个相互关联的隐私问题：（1）隐私自我管理和（2）隐私审计（监控）。我们的第一个研究目标是开发和评估的方法，语义编纂隐私专家的知识的形式的隐私配置文件，使其可以取代复杂的同意书。这些方法将提高用户表达其隐私偏好的能力，并就共享数据的后果做出明智的决定。我们的第二个研究目标是通过数据生命周期（收集，使用，转换和披露）的相关隐私配置文件来执行定义的条件和约束。我们了解预防方法（例如，访问控制、加密或匿名化）来保护数据隐私，特别是在研究方面，这是不够的，因为在允许访问之后，需要履行隐私义务。因此，如果可以让数据保管人事后对数据的处理负责，那么隐私就得到了加强。我们打算通过加强对信息问责制的了解来补充预防性做法。我们希望我们的研究结果将直接影响人们在没有过度负担的情况下对其隐私做出明智决定的能力。使个人能够预见分享其数据的后果也将促进为公共利益而进行的研究，因为个人对数据滥用的关切将得到解决。这项研究也将使数据保管人受益，因为集成的日志机制降低了组织对处理敏感个人信息负责的障碍。这一领域的长期研究将在加拿大和国际上产生研究合作。透明的数据隐私流程可以最大限度地提高收集数据的价值，促进遵守道德和隐私政策，保持数据的来源以供长期探索，并促进可复制的科学。加拿大通过制定先进的隐私政策和法规，被公认为保护个人隐私的领导者。在这一领域的长期研究将通过提供技术支持来支持加拿大在国际合作研究背景下执行隐私政策和法规。

To realize the full potential of data-intensive research in a collaborative research environment, there are several challenges that need to be addressed by the development of sufficient technological solutions. At the core of the challenges are information privacy in data collection, storage, transformation, and sharing, particularly when research data are originated from human activities and health records. In response to these challenges, the long term goal of this research program is to significantly enhance knowledge on information privacy and develop methods to address two interrelated privacy problems in the context of data-intensive research: (1) privacy self-management and (2) privacy auditing (monitoring). Our first research goal is to develop and evaluate methods for semantically codifying privacy expert’s knowledge in form of privacy profiles such that it can be substituted for complex consent forms. The methods will improve users ability to express their privacy preferences and make informed decisions about the consequences of sharing their data. Our second research goal is enforcing the conditions and constraints defined through associated privacy profiles on data lifecycle (collect, use, transformation, and disclosure). We understand a preventive approach (e.g., access control, encryption or anonymization) to enforce data privacy particularly in the research context is inadequate since privacy obligations need to be fulfilled after the access is granted. Therefore, the privacy is enforced if one could hold the data custodian accountable a posteriori for the treatment of the data. We intend to complement the preventive approach with enhancing knowledge on information accountability. We expect the outcome of our research will directly impact people’s ability to make informed decisions on their privacy without excessive burden. Enabling individuals to foresee the consequences of sharing their data will also foster research for public good since individuals concerns on data misuse will be addressed. The research will benefit the data custodians too as an integrated log mechanism lowers the barriers to make organizations accountable for their treatment of sensitive personal information. The long-term research in this field will engender research collaboration both within Canada and internationally. A transparent process of data privacy maximizes the value of collected data, facilitates compliance with ethics and privacy policies, maintains the provenance of data for long-term exploration, and fosters reproducible science. Canada has been recognized as a leader in protecting individuals privacy by developing advanced privacy policies and regulations. The long-term research in this field will support the Canadian lead by providing technological supports to enforce the privacy policies and regulations in the international collaborative research context.