Ethical Aspects of Pediatric Genetic Care: Testing and Treatment

KE Ormond, A Blasimme, E Vayena - Pediatric Clinics, 2023 - pediatric.theclinics.com
Genetic and genomic testing has expanded dramatically since 2010. Pediatricians, both in
general pediatric practice and in various pediatric specialties, will encounter diagnostic and …

[HTML][HTML] Shaping the future US bioeconomy through safety, security, sustainability, and social responsibility

A Attal-Juncqua, G Dods, N Crain, J Diggans… - Trends in …, 2023 - cell.com
Biomanufacturing practitioners and researchers describe the norms that should govern the
growing, global field, to include safety, security, sustainability, and social responsibility …

The pitfalls of genomic data diversity

A Jabloner, A Walker - Hastings Center Report, 2023 - Wiley Online Library
Biomedical research recruitment today focuses on including participants representative of
global genetic variation—rightfully so. But ethnographic attention to practices of inclusion …

[HTML][HTML] Perceptions and beliefs of community gatekeepers about genomic risk information in African cleft research

AM Oladayo, O Odukoya, V Sule, I Molobe, T Busch… - BMC public health, 2024 - Springer
Background A fundamental ethical issue in African genomics research is how socio-cultural
factors impact perspectives, acceptance, and utility of genomic information, especially in …

[HTML][HTML] Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study

R Biasiotto, M Kösters, K Tschigg… - European Journal of …, 2023 - nature.com
Abstract Recall-by-genotype (RbG) research recruits participants previously involved in
genetic research based on their genotype. RbG enables the further study of a particular …

[HTML][HTML] A Vision for Empirical ELSI along the R&D Pipeline

RM Rajagopalan, J Cakici, CS Bloss - AJOB Empirical Bioethics, 2023 - Taylor & Francis
ramya M. rajagopalan a, b, Julie Cakici a, c and Cinnamon S. Bloss a, b aherbert Wertheim
school of public health and human longevity science, Uc san Diego, la Jolla, UsA; bcenter …

Ethical, legal, and social implications of digital health: A needs assessment from the Society of Behavioral Medicine to inform capacity building for behavioral scientists

SP Goldstein, C Nebeker, RB Ellis… - Translational Behavioral …, 2024 - academic.oup.com
The ethical, legal, and social implications (ELSIs) of digital health are important when
researchers and practitioners are using technology to collect, process, or store personal …

[HTML][HTML] Perceptions on the Ethical and Legal Principles that Influence Global Brain Data Governance

P Ochang, D Eke, BC Stahl - Neuroethics, 2024 - Springer
Advances in neuroscience and other disciplines are producing large-scale brain data
consisting of datasets from multiple organisms, disciplines, and jurisdictions in different …

Mismatched and misaligned: responsibility narratives in American research labs for synthetic biotechnologies

M Hey - Journal of Responsible Innovation, 2024 - Taylor & Francis
This article examines what responsibility means in the context of synthetic biotechnologies,
based on academic researchers in the American west who are using/developing synthetic …

[HTML][HTML] The Human Genome Organisation (HUGO) and a vision for Ecogenomics: the Ecological Genome Project

B Capps, R Chadwick, Z Lederman, T Lysaght, C Mills… - Human Genomics, 2023 - Springer
Background The following outlines ethical reasons for widening the Human Genome
Organisation's (HUGO) mandate to include ecological genomics. Main The environment …