Newborn screening by genomic sequencing: opportunities and challenges

D Bick, A Ahmed, D Deen, A Ferlini, N Garnier… - International Journal of …, 2022 - mdpi.com
Newborn screening for treatable disorders is one of the great public health success stories
of the twentieth century worldwide. This commentary examines the potential use of a new …

The All of Us Data and Research Center: Creating a Secure, Scalable, and Sustainable Ecosystem for Biomedical Research

KR Mayo, MA Basford, RJ Carroll… - Annual review of …, 2023 - annualreviews.org
The All of Us Research Program's Data and Research Center (DRC) was established to
help acquire, curate, and provide access to one of the world's largest and most diverse …

Young people's data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom

SK Sieberts, C Marten, E Bampton, EA Björling… - PloS one, 2023 - journals.plos.org
Mobile devices offer a scalable opportunity to collect longitudinal data that facilitate
advances in mental health treatment to address the burden of mental health conditions in …

Enhancing the ethics of user-sourced online data collection and sharing

MN Meyer, J Basl, D Choffnes, C Wilson… - Nature Computational …, 2023 - nature.com
Social media and other internet platforms are making it even harder for researchers to
investigate their effects on society. One way forward is user-sourced data collection of data …

Data-driven science and diversity in the All of Us Research Program

GS Ginsburg, JC Denny, SD Schully - Science Translational Medicine, 2023 - science.org
The National Institutes of Health's All of Us Research Program is an accessible platform that
hosts genomic and phenotypic data to be collected from 1 million participants in the United …

Education and consent for population-based DNA screening: a mixed-methods evaluation of the early check newborn screening pilot study

HL Peay, AY Gwaltney, R Moultrie, H Cope… - Frontiers in …, 2022 - frontiersin.org
A challenge in implementing population-based DNA screening is providing sufficient
information, that is, understandable and acceptable, and that supports informed decision …

The ethics of consent in a shifting genomic ecosystem

SSJ Lee - Annual review of biomedical data science, 2021 - annualreviews.org
The collection and use of human genetic data raise important ethical questions about how to
balance individual autonomy and privacy with the potential for public good. The proliferation …

An idealized clinicogenomic registry to engage underrepresented populations using innovative technology

P Silva, DV Dahlke, ML Smith, W Charles… - Journal of Personalized …, 2022 - mdpi.com
Current best practices in tumor registries provide a glimpse into a limited time frame over the
natural history of disease, usually a narrow window around diagnosis and biopsy. This …

[HTML][HTML] Challenges for precision public health communication in the era of genomic medicine

A Raz, S Timmermans, G Eyal, K Brothers, J Minari - Genetics in Medicine, 2022 - Elsevier
Although still in the early stages of development, the advent of fast, high-output, and cost-
effective next-generation DNA sequencing technology is moving precision medicine into …

[HTML][HTML] A digital health initiative (COVIDsmart) for remote data collection and study of COVID-19's impact on the state of Virginia: prospective cohort study

J Schilling, D Klein, MM Bartholmae… - JMIR Formative …, 2023 - formative.jmir.org
Background: The COVID-19 pandemic has affected people's lives beyond severe and long-
term physical health symptoms. Social distancing and quarantine have led to adverse …