Functional filter for whole-genome sequencing data identifies HHT and stress-associated non-coding SMAD4 polyadenylation site variants> 5 kb from coding DNA

S Xiao, Z Kai, D Murphy, D Li, D Patel… - The American Journal of …, 2023 - cell.com
Despite whole-genome sequencing (WGS), many cases of single-gene disorders remain
unsolved, impeding diagnosis and preventative care for people whose disease-causing …

“I have fought for so many things”: disadvantaged families' efforts to obtain community-based services for their child after genomic sequencing

SL Ackerman, JEH Brown, A Zamora… - AJOB empirical …, 2023 - Taylor & Francis
Background Families whose child has unexplained intellectual or developmental differences
often hope that a genetic diagnosis will lower barriers to community-based therapeutic and …

Rare disease gene association discovery from burden analysis of the 100,000 Genomes Project data

V Cipriani, L Vestito, EF Magavern, JOB Jacobsen… - medRxiv, 2023 - medrxiv.org
To discover rare disease-gene associations, we developed a gene burden analytical
framework and applied it to rare, protein-coding variants from whole genome sequencing of …

Functional filter for whole genome sequence data identifies stress impact, non-coding alternate polyadenylation site variants> 5kb from coding DNA

S Xiao, Z Kai, D Murphy, D Li, D Patel, A Bielowka… - medRxiv, 2023 - medrxiv.org
Despite whole genome sequencing (WGS), why do many single gene disorder cases
remain unsolved, impeding diagnosis and preventative care for people whose disease …

Genomics Research with Undiagnosed Children: Ethical Challenges at the Boundaries of Research and Clinical Care

MC Halley, JL Young, C Tang, KT Mintz… - The Journal of …, 2023 - Elsevier
Objective To explore the perspectives of parents of undiagnosed children enrolled in
genomic diagnosis research regarding their motivations for enrolling their children, their …

Blurred Boundaries: Toward an Expanded Ethics of Research and Clinical Care

MC Halley, NW Olson - The American Journal of Bioethics, 2023 - Taylor & Francis
In this issue, Morain and Largent (2023) raise a pressing issue arising in the context of
embedded research—the nature and extent of investigator duties to patient-participants …