Privacy-Preserving Linkage of Genomic and Clinical Data Sets.

Dixie B Baker,David Van Enckevort,Hanns Lochmuller,Mark Phillips,Domenica Taruscio,Bartha M Knoppers,Petra Kaufmann

doi:10.1109/tcbb.2018.2855125

Abstract

The capacity to link records associated with the same individual across data sets is a key challenge for data-driven research. The challenge is exacerbated by the potential inclusion of both genomic and clinical data in data sets that may span multiple legal jurisdictions, and by the need to enable re-identification in limited circumstances. Privacy-Preserving Record Linkage (PPRL) methods address these challenges. In 2016, the Interdisciplinary Committee of the International Rare Diseases Research Consortium (IRDiRC) launched a task team to explore approaches to PPRL. The task team is a collaboration with the Global Alliance for Genomics and Health (GA4GH) Regulatory and Ethics and Data Security Work Streams, and aims to prepare policy and technology standards to enable highly reliable linking of records associated with the same individual without disclosing their identity except under conditions in which the use of the data has led to information of importance to the individual's safety or health, and applicable law allows or requires the return of results. The PPRL Task Force has examined the ethico-legal requirements, constraints, and implications of PPRL, and has applied this knowledge to the exploration of technology methods and approaches to PPRL. This paper reports and justifies the findings and recommendations thus far.

Highlights

PRIVACY-PRESERVING Record Linkage (PPRL) [1] addresses two primary challenges that lie at the intersection of biomedical research and clinical practice: 1. The de-duplication and linking of datasets for use by researchers, without disclosing the participant’s identity; and2
In 2016, the Global Alliance for Genomics and Health (GA4GH) launched a task team to explore ethical questions, regulatory requirements, and technological methods and approaches related to PPRL
The task team is a collaboration in which the GA4GH (Regulatory and Ethics Work Stream and the Data Security Work Stream) is preparing policy and technology standards, together with the Interdisciplinary Committee of the International Rare Diseases Research Consortium (IRDiRC) to enable highly reliable linking of coded data records associated with the same individual without disclosing the identity of that individual except under conditions in which the use of the data has led to information of importance to the individual’s safety or health, and applicable law allows or requires the return of results

Summary

Introduction

In 2016, the Global Alliance for Genomics and Health (GA4GH) (genomicsandhealth.org) launched a task team to explore ethical questions, regulatory requirements, and technological methods and approaches related to PPRL. The task team is a collaboration in which the GA4GH (Regulatory and Ethics Work Stream and the Data Security Work Stream) is preparing policy and technology standards, together with the Interdisciplinary Committee of the International Rare Diseases Research Consortium (IRDiRC) to enable highly reliable linking of coded data records associated with the same individual without disclosing the identity of that individual except under conditions in which the use of the data has led to information of importance to the individual’s safety or health, and applicable law allows or requires the return of results. The GA4GH believes that this reinforces the right to share in scientific advancement and its benefits as guaranteed by Article 27 of the Universal Declaration of Human Rihts, as mobilized in the GA4GH Framework for Responsible Sharing of Genomic and Health-Related Data [2]

Methods

Results

Conclusion