A roadmap for the human gut cell atlas

M Zilbauer, KR James, M Kaur, S Pott, Z Li… - Nature Reviews …, 2023 - nature.com
The number of studies investigating the human gastrointestinal tract using various single-
cell profiling methods has increased substantially in the past few years. Although this …

[HTML][HTML] Assessing diversity in newborn genomic sequencing research recruitment: Race/ethnicity and primary spoken language variation in eligibility, enrollment, and …

JA Cakici, D Dimmock, S Caylor, M Gaughran… - Clinical Therapeutics, 2023 - Elsevier
Purpose Diagnostic genomic research has the potential to directly benefit participants. This
study sought to identify barriers to equitable enrollment of acutely ill newborns into a …

A global perspective on embryological and fetal collections: Where to from here?

J El‐Haddad, G Štrkalj, N Pather - The Anatomical Record, 2022 - Wiley Online Library
Human fetal and embryos collections (FECs) peaked in the late 19th century, an era before
informed consent, and hence have unclear provenance. These collections are not only …

Population curation: The construction of mutual obligation between individual and state in Danish precision medicine

IM Gjødsbøl, JBL Knox, L Skovgaard… - Social Studies of …, 2024 - journals.sagepub.com
How do precision medicine initiatives (re) organize relations between individuals and
populations? In this article, we investigate how the curation of national genomic populations …

Ethical considerations in data collection and analysis: a review: investigating ethical practices and challenges in modern data collection and analysis

GN Okorie, CA Udeh, EM Adaga… - International Journal of …, 2024 - fepbl.com
In an era where data profoundly influences decision-making across various sectors, this
comprehensive review critically examines the evolving landscape of data science ethics …

Precision Medicine

F Molnár-Gábor - Handbook of Bioethical Decisions. Volume I: Decisions …, 2023 - Springer
Precision medicine combines genetic, environmental and lifestyle variability to inform
disease diagnosis, treatment and prevention, allowing exact medical interventions both on …

[HTML][HTML] Core elements of participant consent documents for Canadian human genomics research and the National Human Genome Library: guidance for policy

H Longstaff, J Flamenbaum, E Richer, J Egar… - CMAJ, 2022 - Can Med Assoc
• This guidance for policy proposes a core set of elements for documents used to obtain
participant consent for human genomics research in Canada.• The core set of elements …

Clinical Genetic Testing in Kidney Disease and Transplantation: Logistical, Ethical, Legal, and Social Considerations

T Schiff - Current Transplantation Reports, 2023 - Springer
Abstract Purpose of Review The role of genetics in renal disorders is being increasingly
recognized, prompting the need to describe and address barriers to meaningful …

[HTML][HTML] Éléments fondamentaux des documents de consentement à participer à la recherche sur le génome humain au Canada et de la Bibliothèque génomique …

H Longstaff, J Flamenbaum, E Richer, J Egar… - CMAJ, 2022 - Can Med Assoc
• Cet ensemble d'éléments fondamentaux contient l'essentiel requis pour s' assurer d'une
mobilisation appropriée de la part des personnes participantes et du personnel en …

[PDF][PDF] Exploring the ethical dimensions of sequencing newborns' genomes: Rapid literature and evidence review

KI Morley, B Leach, L Hocking, J Dawney… - 2022 - files.genomicsengland.co.uk
1.1. 1 Broad context for this research Interest in genetic testing has significantly increased
since the mapping of the human genome in 2003, offering great insight into disease risk …