We are delighted to share the latest publications from our consortium members Bartha M. Knoppers and Mark Phillips from McGill.
Lévesque E, Hagan J, Knoppers BM, Simard J. Organizational challenges to equity in the delivery of services within a new personalized risk-based approach to breast cancer screening. New Genetics and Society, 38-59 (2018) https://doi.org/10.1080/14636778.2018.1549477
Emerging evidence opens new possibilities to improve current breast cancer mammography screening programs. One promising avenue is to tailor mammography screening according to individual risk. However, some factors could challenge the implementation of such approach, specifically its potential impact on the equitable delivery of services. This study aims to identify the barriers and facilitators to the equitable delivery of services within a future integration of a personalized approach in the Québec screening program. We then propose different means to address them. We conducted 16 semi-structured interviews with stakeholders with a role in the management, implementation or assessment of the Québec screening program. The barriers and facilitators identified by respondents were regrouped in two themes: 1) Reproduction of social inequities, and 2) Amplification of regional disparities in access to services. We consider that fostering inclusion through communication strategies and relying on electronic communication technologies could help in addressing these issues.
Baker DB, Knoppers BM, Phillips M, van Enckevort D, Kaufmann P, Lochmuller H, Taruscio D. Privacy-Preserving Linkage of Genomic and Clinical Data Sets. IEEE/ACM Transactions on Computational Biology and Bioinformatics, 1342-1348 (2019) https://doi: 10.1109/TCBB.2018.2855125
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.
Phillips M, Knoppers BM. Whose Commons? Data Protection as a Legal Limit of Open Science. Journal of Law, Medicine & Ethics, 106-111 (2019) https://doi.org/10.1177/1073110519840489
Open science has recently gained traction as establishment institutions have come on-side and thrown their weight behind the movement and initiatives aimed at creation of information commons. At the same time, the movement’s traditional insistence on unrestricted dissemination and reuse of all information of scientific value has been challenged by the movement to strengthen protection of personal data. This article assesses tensions between open science and data protection, with a focus on the GDPR.