Information Accountability for Advanced Research Data Management

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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.