Patients are often enrolled in multiple independent research projects. The value of the datasets generated is dramatically increased if they can be linked together at the level of an individual participant. However, where research projects are run by different investigators or organizations, it is often difficult to know when two datasets contain the same participant. At the same time, identifying information about the participant cannot usually be directly shared for data-protection reasons. Existing ID-generating solutions (NIH GUID, HD-ID etc.) are robustly set up but are project-specific and not globally unique. This topic is of interest not only for the rare disease community, but it also has a larger scope. It is therefore a Task Force was suggested by three members of IRDiRC Interdisciplinary Scientific Committee: Prof. Hanns Lochmüller, Dr. Petra Kaufmann and Dr. Domenica Taruscio, and set up in collaboration with the Regulatory and Ethics Working Group of the Global Alliance for Genomics and Health (GA4GH), co-chaired by Bartha Knoppers.
The objective of this joint IRDiRC-GA4GH Task Force would be to develop a guiding policy for the generation of participant-specific identifiers (pseudonyms) that enable data from the same individual to be connected across multiple projects without directly revealing the participant’s identity. This policy will build on the GA4GH Framework, the Consent Policy, the Data Privacy & Security Policy, and the Accountability Policy.
Task Force Leadership and Coordination
The Privacy-Preserving Record Linkage Task Force is co-chaired by:
- Dr. Petra Kaufmann – Office of Rare Diseases Research, National Center for Advancing Translational Sciences at NIH, USA
- Prof. Bartha Maria Knoppers – McGill University, Canada
- Dr. Dixie Baker, Martin, Blanck, and Associates LLC, USA
The coordinators of this Task Force are:
- Academic coordinator: Mark Phillips – GA4GH, Canada
- Logistical coordinator: Lilian Lau – IRDiRC, France
Post Workshop Documents
- Technology Primer: Overview of Technological Solutions to Support Privacy-Preserving Record Linkage
- Privacy-Preserving Record Linkage: Ethico-Legal Considerations
Comments and suggestions
To submit your comments and suggestions on this Task Force, please contact us by completing this form.