Bartha Maria Knoppers
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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: Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services
Identity development and adaptation in adolescents with genetic conditions: a qualitatively oriented mixed-methods study to develop strategies for optimizing clinical genetics services Open
View article: Primary care providers’ experience and satisfaction with personalised breast cancer screening risk communication: a descriptive cross-sectional study
Primary care providers’ experience and satisfaction with personalised breast cancer screening risk communication: a descriptive cross-sectional study Open
Objective To describe primary care providers’ (PCPs) experience and satisfaction with receiving risk communication documents on their patient’s breast cancer (BC) risk assessment and proposed screening action plan. Design Descriptive cross…
View article: Emerging and evolving values in the changing landscape of genomics
Emerging and evolving values in the changing landscape of genomics Open
Recent advances in human genomics have transformed the field, leading to increased integration of genomics into mainstream clinical care, broadening the potential of personalized medicine, and expanding data generation and sharing. From th…
View article: Barriers and Facilitators to Delivering Multifactorial Risk Assessment and Communication for Personalized Breast Cancer Screening: A Qualitative Study Exploring Implementation in Canada
Barriers and Facilitators to Delivering Multifactorial Risk Assessment and Communication for Personalized Breast Cancer Screening: A Qualitative Study Exploring Implementation in Canada Open
Many jurisdictions are considering a shift to risk-stratified breast cancer screening; however, evidence on the feasibility of implementing it on a population scale is needed. We conducted a prospective cohort study in the PERSPECTIVE I&I …
View article: Genetic discrimination in insurance and employment based on personalized risk stratification for breast cancer screening
Genetic discrimination in insurance and employment based on personalized risk stratification for breast cancer screening Open
Background The Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm (BOADICEA) incorporates the effects of common genetic variants, from polygenic risk scores, pathogenic variants in major breast cancer (BC) su…
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: Genomic sequencing in newborn screening: balancing consent with the right of the asymptomatic at-risk child to be found
Genomic sequencing in newborn screening: balancing consent with the right of the asymptomatic at-risk child to be found Open
View article: Unpacking the notion of “serious” genetic conditions: towards implementation in reproductive decision-making?
Unpacking the notion of “serious” genetic conditions: towards implementation in reproductive decision-making? Open
The notion of a “serious” genetic condition is commonly used in clinical contexts, laws, and policies to define and delineate both the permissibility of and, access to, reproductive genomic technologies. Yet, the notion lacks conceptual an…
View article: Implementing the human right to science in the context of health: introduction to the special issue
Implementing the human right to science in the context of health: introduction to the special issue Open
View article: Implementing Multifactorial Risk Assessment with Polygenic Risk Scores for Personalized Breast Cancer Screening in the Population Setting: Challenges and Opportunities
Implementing Multifactorial Risk Assessment with Polygenic Risk Scores for Personalized Breast Cancer Screening in the Population Setting: Challenges and Opportunities Open
Risk-stratified breast screening has been proposed as a strategy to overcome the limitations of age-based screening. A prospective cohort study was undertaken within the PERSPECTIVE I&I project, which will generate the first Canadian evide…
View article: Table of Contents
Table of Contents Open
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: From Patchwork to Framework: Expert Interview Insights on Establishing a Bioethics Council for Canada
From Patchwork to Framework: Expert Interview Insights on Establishing a Bioethics Council for Canada Open
Canada has historically relied on a system of ad hoc committees for ethical guidance on public health and science policy, unlike the more centralized approach of more than 140 countries worldwide. Here, drawing on interviews with leaders a…
View article: Frontline Ethico-legal Issues in Childhood Cancer Genetics Research
Frontline Ethico-legal Issues in Childhood Cancer Genetics Research Open
Clinical research involving child participants frequently raises both legal and ethical concerns that researchers, clinicians and parents must navigate in order to pursue relevant pediatric-centered investigation in health, and particularl…
View article: Whither Health Research
Whither Health Research Open
Under Article 24 of the Convention on the Rights of the Child ( crc ), children have the right to the highest attainable standard of health. One component of this right that has received little attention is the connection between children’…
View article: Responsible Processing and Sharing of Genomic Data: Bringing Health Technologies Industries to the Table
Responsible Processing and Sharing of Genomic Data: Bringing Health Technologies Industries to the Table Open
View article: International Genomic Data Sharing by Health Technologies Industries: Points to Consider
International Genomic Data Sharing by Health Technologies Industries: Points to Consider Open
This document outlines Points to Consider (PtC) for the responsible sharing of human genomic and health data internationally by Health Technologies Industries (HTI). HTI can contribute unique resources, technologies, and expertise to trans…
View article: Charter for Regenerative Medicine
Charter for Regenerative Medicine Open
This Charter for Regenerative Medicine endorses a vision for the future of regenerative medicine. It is a vision that acknowledges the potential life-changing benefits of regenerative medicine while recognizing …
View article: International Genomic Data Sharing by Health Technologies Industries: Points to Consider
International Genomic Data Sharing by Health Technologies Industries: Points to Consider Open
<p>This document outlines Points to Consider (PtC) for the responsible sharing of human genomic and</p>\n\n<p>health data internationally by Health Technologies Industries (HTI). HTI can contribute unique resources,</p…
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: Regulating cancer risk prediction: legal considerations and stakeholder perspectives on the Canadian context
Regulating cancer risk prediction: legal considerations and stakeholder perspectives on the Canadian context Open
View article: Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening
Canadian Healthcare Professionals’ Views and Attitudes toward Risk-Stratified Breast Cancer Screening Open
Given the controversy over the effectiveness of age-based breast cancer (BC) screening, offering risk-stratified screening to women may be a way to improve patient outcomes with detection of earlier-stage disease. While this approach seems…
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: Perceptions and Usability of PREVENTION: A Breast Cancer Risk Assessment e-Platform
Perceptions and Usability of PREVENTION: A Breast Cancer Risk Assessment e-Platform Open
Background: The PREVENTION e-platform was developed to provide accessible and evidence-based health information tailored to different Breast Cancer (BC) risk levels. The demonstration study objectives were to (1) assess the usability and p…
View article: Data and Tools Integration in the Canadian Open Neuroscience Platform
Data and Tools Integration in the Canadian Open Neuroscience Platform Open
We present the Canadian Open Neuroscience Platform (CONP) portal to answer the research community’s need for flexible data sharing resources and provide advanced tools for search and processing infrastructure capacity. This portal differs …
View article: Cancer Risk Prediction Regulation Models: Canada Contrasted with the U.S. and the E.U.
Cancer Risk Prediction Regulation Models: Canada Contrasted with the U.S. and the E.U. Open
Risk prediction models hold great promise to reduce the impact of cancer in society through advanced warning of risk and improved preventative modalities. These models are evolving and becoming more complex, increasingly integrating geneti…
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…