Canada: will privacy rules continue to favour open science?

Human Genetics
Adrian Thorogood

Abstract

Canada's regulatory frameworks governing privacy and research are generally permissive of genomic data sharing, though they may soon be tightened in response to public concerns over commercial data handling practices and the strengthening of influential European privacy laws. Regulation can seem complex and uncertain, in part because of the constitutional division of power between federal and provincial governments over both privacy and health care. Broad consent is commonly practiced in genomic research, but without explicit regulatory recognition, it is often scrutinized by research or privacy oversight bodies. Secondary use of health-care data is legally permissible under limited circumstances. A new federal law prohibits genetic discrimination, but is subject to a constitutional challenge. Privacy laws require security safeguards proportionate to the data sensitivity, including breach notification. Special categories of data are not defined a priori. With some exceptions, Canadian researchers are permitted to share personal information internationally but are held accountable for safeguarding the privacy and security of these data. Cloud computing to store and share large scale data sets is permitted, if shared responsibili...Continue Reading

References

Sep 13, 2012·Molecular Systems Biology·Eric E Schadt
May 9, 2014·Nature Reviews. Genetics·Yaniv Erlich, Arvind Narayanan
Jun 4, 2016·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Katie M Saulnier, Yann Joly
Jun 4, 2016·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Jennifer StoddartYann Joly
Dec 19, 2016·Facets : a Multidisciplinary Open Access Journal·Stephanie O M DykeYann Joly
Apr 4, 2017·Trends in Genetics : TIG·Yann JolyBartha M Knoppers
Jul 26, 2017·CMAJ : Canadian Medical Association Journal = Journal De L'Association Medicale Canadienne·Suzanne N Morin, Ken Flegel
Jul 26, 2017·PLoS Biology·Timothy Caulfield, Blake Murdoch
Feb 13, 2018·CMAJ : Canadian Medical Association Journal = Journal De L'Association Medicale Canadienne·Miriam S ReuterStephen W Scherer
Feb 20, 2018·Human Genomics·Adrian ThorogoodUNKNOWN Participant Values Task Team of the Global Alliance for Genomics and Health
Feb 28, 2018·Lancet·Danielle MartinGregory P Marchildon
May 16, 2018·CMAJ : Canadian Medical Association Journal = Journal De L'Association Medicale Canadienne·Yvonne Bombard, Bev Heim-Myers
Jun 9, 2018·Science·Natalie RamAmy L McGuire

❮ Previous
Next ❯

Citations

Jun 6, 2020·Cambridge Quarterly of Healthcare Ethics : CQ : the International Journal of Healthcare Ethics Committees·Benjamin Capps
Jul 16, 2019·NPJ Digital Medicine·Rickey E CarterPaul A Friedman
Jan 21, 2020·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Ma'n H ZawatiJames W Hazel

❮ Previous
Next ❯

Software Mentioned

CanDIG
Care4Rare SOLVE
PIPEDA
Cambridge Analytica

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.

Related Papers

The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics
Katie M Saulnier, Yann Joly
© 2022 Meta ULC. All rights reserved