# Incorporating genomics into the clinical care of diverse NYC children

> **NIH NIH U01** · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · 2020 · $3,105,550

## Abstract

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:** 9957176
- **Project number:** 5U01HG009610-04
- **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:** 2020
- **Award amount:** $3,105,550
- **Award type:** 5
- **Project period:** 2017-08-04 → 2023-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9957176

## Citation

> US National Institutes of Health, RePORTER application 9957176, Incorporating genomics into the clinical care of diverse NYC children (5U01HG009610-04). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/9957176. Licensed CC0.

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