Streamlining review of research involving humans: Canadian models: Table 1

Zawati, Ma’n H.; Junker, Anne; Knoppers, Bartha Maria; Rahimzadeh, Vasiliki

doi:10.1136/jmedgenet-2014-102640

Cited by 7 publications

(3 citation statements)

References 24 publications

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“…To implement such a method without derogating from the shared federal and provincial oversight of health data, privacy regulators can subject government-created data repositories to delegated oversight performed by a designated Privacy Commissioner in accordance with a commonly chosen privacy law, irrespective of the provenance of the data stored in the repository. In research ethics oversight, such imperatives have prompted the adoption of delegated review models, wherein one research ethics board performs ethics review of a research project across multiple sites (Zawati et al 2015). An equitable pandemic response will benefit from consistent regulation and coordinated oversight.…”

Section: Harmonizing Data Stewardship and Regulatory Oversightmentioning

confidence: 99%

Pandemics, privacy, and public health research

Bernier

Knoppers

2020

Can J Public Health

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Sharing data expediently for pandemic response purposes exposes healthcare providers in Canada to significant regulatory uncertainty. Duplicative and contradictory ethical and legal duties flowing from overlapping sources can stifle flows of medical data among clinicians, researchers, and institutions. Authorities should support caregivers and accelerate research by providing clear guidance to the health sector. Institutions should foster robust data stewardship and standardize their practices to those recognized among the international health informatics community. Reform is critical to ensuring Canadian healthcare providers can deliver efficient health responses that are integrated with dispersed and disparate national and international approaches. Résumé Les chercheurs et cliniciens canadiens désirant intenter le partage rapide des données médicales dans le cadre d'une mobilisation contre la pandémie se retrouvent assujettis à un régime juridique incertain. Les obligations qui leur sont imposées par l'éthique tant que par le droit peuvent s'avérer complexes et contradictoires, en raison du chevauchement de plusieurs politiques, règlements et lois. Il est impératif que les autorités se prononcent afin d'éclaircir les démarches que doivent entreprendre les fournisseurs de soins de santé en partageant les données médicales. Les institutions, quant à elles, devraient concilier leurs pratiques de gouvernance des données à celles employées à l'échelle mondiale par les organismes internationaux oeuvrant dans le domaine de la santé. Une solution durable permettant le partage pancanadien et international des données de santé nécessitera désormais la refonte de la législation sibylline actuellement en vigueur.

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Section: Harmonizing Data Stewardship and Regulatory Oversightmentioning

confidence: 99%

Pandemics, privacy, and public health research

Bernier

Knoppers

2020

Can J Public Health

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“…This development clearly challenges the principles discussed above, notably privacy and security but also accentuates the procedural inefficiencies of research ethics review. If research is increasingly global, a system for mutual recognition of substantial equivalency of ethics review and of oversight in different jurisdictions is key for collaborative science generally, but genomics and multi-centred clinical trials specifically [ 36 ]. Concerns about whether samples can be appropriately protected in different jurisdictions raises questions about the possibility of ethics review harmonization.…”

Section: Discussionmentioning

confidence: 99%

The ethics weathervane

Knoppers

Chadwick²

2015

BMC Med Ethics

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BackgroundGlobal collaboration in genomic research is increasingly both a scientific reality and an ethical imperative. This past decade has witnessed the emergence of six new, interconnected areas of ethical consensus and emphasis for policy in genomics: governance, security, empowerment, transparency, the right not to know, and globalization.DiscussionThe globalization of genomic research warrants an approach to governance policies grounded in human rights.SummaryA human rights approach activates the ethical principles underpinning genomic research. It lends force to the right of all citizens to benefit from scientific progress, and to the right of all scientists to be recognized for their contributions.

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“…Researchers agree that only by using very large sample sizes will genomic studies have the proper statistical power ( 181 , 182 ). “These large case–control studies are essential for boosting the statistical power needed to detect the genetic variants responsible for rare diseases and can provide the necessary knowledge for use in the clinical setting,” ( 183 ).…”

Section: Contributions Of Big Datamentioning

confidence: 99%

Big Data’s Role in Precision Public Health

Dolley

2018

Front. Public Health

150

114

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Precision public health is an emerging practice to more granularly predict and understand public health risks and customize treatments for more specific and homogeneous subpopulations, often using new data, technologies, and methods. Big data is one element that has consistently helped to achieve these goals, through its ability to deliver to practitioners a volume and variety of structured or unstructured data not previously possible. Big data has enabled more widespread and specific research and trials of stratifying and segmenting populations at risk for a variety of health problems. Examples of success using big data are surveyed in surveillance and signal detection, predicting future risk, targeted interventions, and understanding disease. Using novel big data or big data approaches has risks that remain to be resolved. The continued growth in volume and variety of available data, decreased costs of data capture, and emerging computational methods mean big data success will likely be a required pillar of precision public health into the future. This review article aims to identify the precision public health use cases where big data has added value, identify classes of value that big data may bring, and outline the risks inherent in using big data in precision public health efforts.

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Streamlining review of research involving humans: Canadian models: Table 1

Cited by 7 publications

References 24 publications

Pandemics, privacy, and public health research

Pandemics, privacy, and public health research

The ethics weathervane

Big Data’s Role in Precision Public Health

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