Precision health data: Requirements, challenges and existing techniques for data security and privacy
Precision health leverages information from various sources, including omics, lifestyle,
environment, social media, medical records, and medical insurance claims to enable …
environment, social media, medical records, and medical insurance claims to enable …
Organoids: a systematic review of ethical issues
D De Jongh, EK Massey, EM Bunnik - Stem Cell Research & Therapy, 2022 - Springer
Organoids are 3D structures grown from pluripotent stem cells derived from human tissue
and serve as in vitro miniature models of human organs. Organoids are expected to …
and serve as in vitro miniature models of human organs. Organoids are expected to …
Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data
Addressing Indigenous rights and interests in genetic resources has become increasingly
challenging in an open science environment that promotes unrestricted access to genomic …
challenging in an open science environment that promotes unrestricted access to genomic …
Data sharing under the General Data Protection Regulation: time to harmonize law and research ethics?
A Vlahou, D Hallinan, R Apweiler, A Argiles, J Beige… - …, 2021 - Am Heart Assoc
The General Data Protection Regulation (GDPR) became binding law in the European
Union Member States in 2018, as a step toward harmonizing personal data protection …
Union Member States in 2018, as a step toward harmonizing personal data protection …
Reflections on dynamic consent in biomedical research: the story so far
HJA Teare, M Prictor, J Kaye - European journal of human genetics, 2021 - nature.com
Dynamic consent (DC) was originally developed in response to challenges to the informed
consent process presented by participants agreeing to 'future research'in biobanking. In the …
consent process presented by participants agreeing to 'future research'in biobanking. In the …
[图书][B] Everyday data cultures
The AI revolution can seem powerful and unstoppable, extracting data from every aspect of
our lives and subjecting us to unprecedented surveillance and control. But at ground level …
our lives and subjecting us to unprecedented surveillance and control. But at ground level …
Broad consent for biobanks is best–provided it is also deep
RB Mikkelsen, M Gjerris, G Waldemar, P Sandøe - BMC medical ethics, 2019 - Springer
Background As biobank research has become increasingly widespread within biomedical
research, study-specific consent to each study, a model derived from research involving …
research, study-specific consent to each study, a model derived from research involving …
Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process
Abstract The Cooperative Health Research in South Tyrol (CHRIS) is a longitudinal study in
Northern Italy, using dynamic consent since its inception in 2011. The CHRIS study collects …
Northern Italy, using dynamic consent since its inception in 2011. The CHRIS study collects …
[HTML][HTML] Informed consent in biomedical research
Informed consent is the result of tumultuous events in both the clinical and research arenas
over the last 100 years. Throughout this time, the notion of informed consent has shifted …
over the last 100 years. Throughout this time, the notion of informed consent has shifted …
[HTML][HTML] Data protection-compliant broad consent for secondary use of health care data and human biosamples for (bio) medical research: Towards a new German …
Background The secondary use of deidentified but not anonymized patient data is a
promising approach for enabling precision medicine and learning health care systems. In …
promising approach for enabling precision medicine and learning health care systems. In …