New GeneDx Study Reveals Racial Disparities in Genetic Diagnosis Due to Systemic Barriers, Not Diagnostic Yields
07 November 2024 - 10:35PM
Business Wire
Data demonstrates the strength of GeneDx’s
diverse database; exome diagnostic rate is high regardless of
patient’s ancestral background
GeneDx industry leading dataset from 46%
non-white populations
GeneDx (Nasdaq: WGS), a leader in delivering improved health
outcomes through genomic insights, today announced the results of
an extensive study shedding light on the critical issue of racial
disparities in access to an accurate genetic diagnosis. The study,
a collaboration among GeneDx, The University of Washington, Brotman
Baty Institute for Precision Medicine, Geisinger and Seattle
Children’s Hospital, was conducted on nearly 187,000 samples
performed and across approximately 73,000 patients who received
exome testing with GeneDx.
Findings uncover the diagnostic yield of exome sequencing for
making an accurate and precise genetic diagnosis in children with
rare diseases does not vary significantly between non-white and
non-Hispanic white patients. Data from the study reveals that 46%
of patients evaluated were non-white and within this group, the
diagnostic rate for GeneDx’s exome testing when both parents were
also tested remained consistently high at 27.1% compared to 27.4%
for non-Hispanic white patients. These findings demonstrate
disparities in precise genetic diagnosis are not due to diagnostic
yields, but rather larger systemic structural barriers which may
include complex workflows, costs, clinician shortages, unconscious
biases and more.
“Our findings show that when people are tested, diagnostic rates
among populations are comparable,” said Mike Bamshad, MD, FACMG,
Professor of Pediatrics at the University of Washington and Seattle
Children’s Hospital. “Nevertheless, considerable disparities in
access to testing remain. We, and our collaborators at GeneDx, are
testing a variety of novel ways to simplify clinical workflows,
increase provider readiness, and ultimately reduce barriers to
genetic testing.”
“The growing utilization of GeneDx’s exome and genome testing
enriches our unparalleled diverse dataset and creates a flywheel
effect. With every test we complete, we deepen our understanding of
disease-gene connections to inform more definitive diagnoses
regardless of ancestral background. These are critical findings to
ensure health equity within genomics,” said Dr. Paul Kruszka, MD,
FACMG, Chief Medical Officer at GeneDx. “With similar diagnostic
yields, the life-changing actionability of an accurate genetic
diagnosis should be accessible to all and GeneDx is committed to
breaking down systemic barriers and advocating for equitable
access.”
The study was constructed using GeneDx’s industry leading
diverse dataset of more than 700,000 clinical exome and genomes.
The data was presented this week at the American Society of Human
Genetics (ASHG) annual meeting. GeneDx leverages its database as a
critical tool to drive transformational care for pediatric patients
and as the industry continues to look for strong evidence to expand
the utilization and clinical utility of genome sequencing.
About GeneDx:
GeneDx (Nasdaq: WGS) delivers personalized and actionable health
insights to inform diagnosis, direct treatment, and improve drug
discovery. The company is uniquely positioned to accelerate the use
of genomic and large-scale clinical information to enable precision
medicine as the standard of care. GeneDx is at the forefront of
transforming healthcare through its industry-leading exome and
genome testing and interpretation services, fueled by the world’s
largest, rare disease data sets. For more information, please visit
www.genedx.com and connect with us on LinkedIn, Facebook, and
Instagram.
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