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几个挑战。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源于人类活动和健康记录时。为了应对这些挑战，本研究计划的长期目标是显著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（监测）。我们的第一个研究目标是开发和评估以隐私配置文件的形式对隐私专家的知识进行语义编纂的方法，以便它可以取代复杂的同意表格。这些方法将提高用户表达其隐私偏好的能力，并对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在数据生命周期（收集、使用、转换和披露）上执行通过相关隐私配置文件定义的条件和约束。我们理解预防性方法（例如访问控制、加密或匿名化）来加强数据隐私，特别是在研究背景下是不够的，因为隐私义务需要在授予访问权限后履行。因此，如果能够让数据保管人事后对数据的处理负责，那么隐私就得到了强制执行。我们打算通过加强对信息问责制的了解来补充预防办法。我们希望我们的研究结果能够直接影响人们在不增加过多负担的情况下做出明智的隐私决定的能力。使个人能够预见共享数据的后果也将促进公益研究，因为个人对数据滥用的担忧将得到解决。这项研究也将使数据管理员受益，因为集成的日志机制降低了使组织对敏感个人信息的处理负责的障碍。在这一领域的长期研究将在加拿大国内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发挥所收集数据的价值，促进遵守道德和隐私政策，维护数据的来源，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。该领域的长期研究将为加拿大在国际合作研究背景下实施隐私政策和法规提供技术支持，从而支持加拿大的领先地位。

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.