# Incorporating genomics into the clinical care of diverse NYC children

> **NIH NIH U01** · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · 2021 · $2,016,562

## Abstract

Project Summary
We propose a new CSER site, NYCKidSeq, to advance the implementation of genomic medicine in children
from underrepresented minority populations in Harlem and the Bronx. We will address three key challenges
associated with implementing genomics for low income and diverse populations; diversity, communication
and community engagement. NYC, particularly Harlem and the Bronx, has the most diverse population in
the United States, yet children from these communities bear a disproportionate burden of illness and lack of
access to quality care, and lag in benefitting from advances in research and technology. We will therefore
perform whole genome sequencing (WGS) for diagnostic purposes in 1200 children from ancestrally and
socioeconomically diverse backgrounds who have undiagnosed neurologic, cardiac, or immune disorders. We
will evaluate the individual clinical utility of WGS and the impact on healthcare costs, and compare its
diagnostic accuracy to targeted gene panels and chromosomal microarray. Given the complexity of genomic
interpretation, open, broadly targeted, and comprehensive communication is essential. To address this, we
will first evaluate participants' understanding and attitudes about genomic testing and decision-making, and will
then incorporate these findings into the development of a suite of software resources to facilitate web-based
exploration of the results of genetic testing, enhance education and counseling about genomic medicine, and
communication to carers at all levels of expertise. Recognizing that poor communication and issues with
understanding and translating the new “language” of genomic sequencing are major barriers to
implementation, we will address this at three levels of community engagement: primary care providers,
communities, and participating parents in order to create dialogue and facilitate understanding and
transparency. This powerful collaboration between the Mount Sinai Health System, Albert Einstein College of
Medicine/Montefiore Medical Center, and the New York Genome Center presents a unique “real life”
opportunity to mutually build upon strengths while addressing implementation challenges across health care
systems. Overall, this work will inform the global genomics and clinical communities about how to implement
genomic medicine in a diverse population in a clinically useful, technologically savvy, culturally sensitive, and
ethically sound manner.

## Key facts

- **NIH application ID:** 10361994
- **Project number:** 3U01HG009610-04S1
- **Recipient organization:** ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
- **Principal Investigator:** BRUCE D GELB
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $2,016,562
- **Award type:** 3
- **Project period:** 2021-03-15 → 2023-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10361994

## Citation

> US National Institutes of Health, RePORTER application 10361994, Incorporating genomics into the clinical care of diverse NYC children (3U01HG009610-04S1). Retrieved via AI Analytics 2026-05-28 from https://api.ai-analytics.org/grant/nih/10361994. Licensed CC0.

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