The EU general data protection regulation: implications for international scientific research in the digital era
ES Dove - Journal of Law, Medicine & Ethics, 2018 - cambridge.org
On May 25, 2018, the General Data Protection Regulation (GDPR) 1 took full legal effect
across the European Union (EU) and, subsequently, the European Economic Area (EEA), 2 …
across the European Union (EU) and, subsequently, the European Economic Area (EEA), 2 …
[HTML][HTML] Governing personalized health: A scoping review
Genetic research is advancing rapidly. One important area for the application of the results
from this work is personalized health. These are treatments and preventive interventions …
from this work is personalized health. These are treatments and preventive interventions …
[HTML][HTML] The Bermuda Triangle: The pragmatics, policies, and principles for data sharing in the history of the human genome project
K Maxson Jones, RA Ankeny… - Journal of the History of …, 2018 - Springer
Abstract The Bermuda Principles for DNA sequence data sharing are an enduring legacy of
the Human Genome Project (HGP). They were adopted by the HGP at a strategy meeting in …
the Human Genome Project (HGP). They were adopted by the HGP at a strategy meeting in …
[HTML][HTML] The ethical and legal landscape of brain data governance
Neuroscience research is producing big brain data which informs both advancements in
neuroscience research and drives the development of advanced datasets to provide …
neuroscience research and drives the development of advanced datasets to provide …
Sharing data to build a medical information commons: from Bermuda to the Global Alliance
R Cook-Deegan, RA Ankeny… - Annual Review of …, 2017 - annualreviews.org
The Human Genome Project modeled its open science ethos on nematode biology, most
famously through daily release of DNA sequence data based on the 1996 Bermuda …
famously through daily release of DNA sequence data based on the 1996 Bermuda …
Comparative approaches to biobanks and privacy
MA Rothstein, BM Knoppers… - The Journal of Law …, 2016 - journals.sagepub.com
Laws in the 20 jurisdictions studied for this project display many similar approaches to
protecting privacy in biobank research. Although few have enacted biobank-specific …
protecting privacy in biobank research. Although few have enacted biobank-specific …
[HTML][HTML] Human genome editing: how to prevent rogue actors
BA Townsend - BMC Medical Ethics, 2020 - Springer
Background Human genome editing technologies offer much potential benefit. However,
central to any conversation relating to the application of such technologies are certain …
central to any conversation relating to the application of such technologies are certain …
International data sharing and rare disease: the importance of ethics and patient involvement
A Thorogood - Rare Diseases, 2020 - books.google.com
Improving our understanding of rare disease and developing new therapies can only
succeed through global collaboration. Whole genome sequencing is increasingly being …
succeed through global collaboration. Whole genome sequencing is increasingly being …
[图书][B] Protecting genetic privacy in biobanking through data protection law
D Hallinan - 2021 - books.google.com
Page 1 OXFORD Erleef & etc DEGREE PROTECTING GENETIC III II PRIVACY IN IN
BIOBANKING THROUGH III DATA || ||||||| PROTECTION LAW III III DARA HALLINAN SEASES …
BIOBANKING THROUGH III DATA || ||||||| PROTECTION LAW III III DARA HALLINAN SEASES …
[HTML][HTML] The biobank for the molecular classification of kidney disease: research translation and precision medicine in nephrology
DA Muruve, MC Mann, K Chapman, JF Wong… - BMC nephrology, 2017 - Springer
Background Advances in technology and the ability to interrogate disease pathogenesis
using systems biology approaches are exploding. As exemplified by the substantial …
using systems biology approaches are exploding. As exemplified by the substantial …