Alexander Bernier
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View article: Toward Ethical Provenance Tracking: The GA4GH Model Data Access Agreement (DAA)
Toward Ethical Provenance Tracking: The GA4GH Model Data Access Agreement (DAA) Open
Model clauses can be used to drive administrative efficiencies and institutional compliance for managing access to human genomic data for research. Additional machine-readable consents and software solutions are needed to support traceable…
View article: A roadmap for navigating child health research data sharing across Canada and beyond – building on UCAN CAN-DU
A roadmap for navigating child health research data sharing across Canada and beyond – building on UCAN CAN-DU Open
View article: Revisiting the Many Legal Institutions that Support Contractual Commitments in a Globalized World
Revisiting the Many Legal Institutions that Support Contractual Commitments in a Globalized World Open
Neoclassical economic models assume the enforcement of contracts to be costless and automatic. In practice, litigation and adjudication subject contract enforcement to high transaction costs. The characteristics of the local legal environm…
View article: Data sharing ethics toolkit: The Human Cell Atlas
Data sharing ethics toolkit: The Human Cell Atlas Open
Striving to build an exhaustive guidebook of the types and properties of human cells, the Human Cell Atlas’ (HCA) success relies on the sampling of diverse populations, developmental stages, and tissue types. Its open science philosophy pr…
View article: The commitment of the human cell atlas to humanity
The commitment of the human cell atlas to humanity Open
The Human Cell Atlas (HCA) is a global partnership "to create comprehensive reference maps of all human cells-the fundamental units of life - as a basis for both understanding human health and diagnosing, monitoring, and treating disease."…
View article: Common conditions of use elements. Atomic concepts for consistent and effective information governance
Common conditions of use elements. Atomic concepts for consistent and effective information governance Open
View article: Getting your DUCs in a row - standardising the representation of Digital Use Conditions
Getting your DUCs in a row - standardising the representation of Digital Use Conditions Open
Improving patient care and advancing scientific discovery requires responsible sharing of research data, healthcare records, biosamples, and biomedical resources that must also respect applicable use conditions. Defining a standard to stru…
View article: Open Data Governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum
Open Data Governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum Open
Scientific research communities pursue dual imperatives in implementing strategies to share their data. These communities attempt to maximize the accessibility of biomedical data for downstream research use, in furtherance of open science …
View article: Public Biological Databases and the Sui Generis Database Right
Public Biological Databases and the Sui Generis Database Right Open
The sui generis database right is an intellectual property right created in the European Union to stimulate investment in the curation of databases. Since its inception, communities engaged in research and development efforts have question…
View article: Common Conditions of Use Elements. Atomic Concepts for Consistent and Effective Information Governance.
Common Conditions of Use Elements. Atomic Concepts for Consistent and Effective Information Governance. Open
<p>Myriad policy, ethical and legal considerations underpin the sharing of biological resources, implying the need for standardised and yet flexible ways to digitally represent diverse 'use conditions'. We herein report a cor…
View article: Getting Your DUCs in a Row - Standardising the Representation of Digital Use Conditions
Getting Your DUCs in a Row - Standardising the Representation of Digital Use Conditions Open
<p>Improving patient care and advancing scientific discovery requires responsible sharing of research data, healthcare records, biosamples, and biomedical resources that must also respect applicable use conditions. Defining a standar…
View article: The Canadian Open Neuroscience Platform—An open science framework for the neuroscience community
The Canadian Open Neuroscience Platform—An open science framework for the neuroscience community Open
The Canadian Open Neuroscience Platform (CONP) takes a multifaceted approach to enabling open neuroscience, aiming to make research, data, and tools accessible to everyone, with the ultimate objective of accelerating discovery. Its core in…
View article: Reconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory
Reconciling the biomedical data commons and the GDPR: three lessons from the EUCAN ELSI collaboratory Open
The coming-into-force of the EU General Data Protection Regulation (GDPR) is a watershed moment in the legal recognition of enforceable rights to informational self-determination. The rapid evolution of legal requirements applicable to dat…
View article: CONP Ethics Toolkit v1.0.4
CONP Ethics Toolkit v1.0.4 Open
CONP Ethics Toolkit consisting of: Model prospective consent clauses Retrospective consent filter De-identification information and tools This consent toolkit is the product of extended discussions and careful drafting that considers bot…
View article: Federated Analysis for Privacy-Preserving Data Sharing: A Technical and Legal Primer
Federated Analysis for Privacy-Preserving Data Sharing: A Technical and Legal Primer Open
Continued advances in precision medicine rely on the widespread sharing of data that relate human genetic variation to disease. However, data sharing is severely limited by legal, regulatory, and ethical restrictions that safeguard patient…
View article: Open Data in the Era of the GDPR: Lessons from the Human Cell Atlas
Open Data in the Era of the GDPR: Lessons from the Human Cell Atlas Open
The Human Cell Atlas (HCA) is striving to build an open community that is inclusive of all researchers adhering to its principles and as open as possible with respect to data access and use. However, open data sharing can pose certain chal…
View article: Recording the ethical provenance of data and automating data stewardship
Recording the ethical provenance of data and automating data stewardship Open
Health organisations use numerous different mechanisms to collect biomedical data, to determine the applicable ethical, legal and institutional conditions of use, and to reutilise the data in accordance with the relevant rules. These metho…
View article: Bridging the European Data Sharing Divide in Genomic Science
Bridging the European Data Sharing Divide in Genomic Science Open
In this viewpoint, we argue for the importance of creating data spaces for genomic research that are detached from contexts in which fundamental rights concerns related to surveillance measures override a purpose-specific balancing of fund…
View article: Practicing Open Data Governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum
Practicing Open Data Governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum Open
This publication details the data stewardship practices of the Canadian Open Neuroscience Platform (CONP)
View article: Practicing Open Data Governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum
Practicing Open Data Governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum Open
This publication details the data stewardship practices of the Canadian Open Neuroscience Platform (CONP)
View article: Author Correction: Computational tools for genomic data de-identification: facilitating data protection law compliance
Author Correction: Computational tools for genomic data de-identification: facilitating data protection law compliance Open
View article: The international data governance landscape
The international data governance landscape Open
As the adoption of digital health accelerates health research increasingly relies on large quantities of biomedical data. Research institutions scattered across a large number of jurisdictions collaborate in producing and analyzing biomedi…
View article: Computational tools for genomic data de-identification: facilitating data protection law compliance
Computational tools for genomic data de-identification: facilitating data protection law compliance Open
View article: An agenda-setting paper on data sharing platforms: euCanSHare workshop
An agenda-setting paper on data sharing platforms: euCanSHare workshop Open
Various data sharing platforms are being developed to enhance the sharing of cohort data by addressing the fragmented state of data storage and access systems. However, policy challenges in several domains remain unresolved. The euCanSHare…
View article: GA4GH: International policies and standards for data sharing across genomic research and healthcare
GA4GH: International policies and standards for data sharing across genomic research and healthcare Open
View article: Biomedical Data Identifiability in Canada and the European Union: From Risk Qualification to Risk Quantification?
Biomedical Data Identifiability in Canada and the European Union: From Risk Qualification to Risk Quantification? Open
Data identifiability standards in Canada and the European Union rely on the same concepts to distinguish personal data from non-personal data. However, courts have interpreted the substantive content of such metrics divergently. Interpreti…
View article: Of Screening, Stratification, and Scores
Of Screening, Stratification, and Scores Open
Technological innovations including risk-stratification algorithms and large databases of longitudinal population health data and genetic data are allowing us to develop a deeper understanding how individual behaviors, characteristics, and…
View article: An agenda-setting paper on data sharing platforms: euCanSHare workshop
An agenda-setting paper on data sharing platforms: euCanSHare workshop Open
Various data sharing platforms are being developed to enhance the sharing of cohort data by addressing the fragmented state of data storage and access systems. However, policy challenges in several domains remain unresolved. The euCanSHare…
View article: Longitudinal Health Studies: Secondary Uses Serving the Future
Longitudinal Health Studies: Secondary Uses Serving the Future Open
Our research compares the ethical and institutional conditions that govern the sharing and secondary use of longitudinal population health data from multiple cohorts. The data use and data sharing conditions applicable to 27 population hea…
View article: Radical collaboration during a global health emergency: development of the RDA COVID-19 data sharing recommendations and guidelines
Radical collaboration during a global health emergency: development of the RDA COVID-19 data sharing recommendations and guidelines Open
Background:The coronavirus disease 2019 (COVID-19) global pandemic required a rapid and effective response. This included ethical and legally appropriate sharing of data. The European Commission (EC) called upon the Research Data Alliance …