# ELSI Administrative Supplement - Center for Human Reference Genome Diversity

> **NIH NIH U01** · UNIVERSITY OF CALIFORNIA SANTA CRUZ · 2021 · $246,210

## Abstract

PROJECT SUMMARY / ABSTRACT
The Human Pangenome Reference Consortium (HPRC) aims to expand the human reference genome to
include individuals from globally diverse backgrounds. This project is expected to provide a new reference
resource for human genetics and biomedicine that better represents global human genomic diversity. The
HPRC is deploying novel third generation sequencing technologies to generate high quality genomes
telomere-to-telomere at production scale. Yet, there was no scholarly or financial investment made in the
ethical, legal, and social implications (ELSI) inherent in achieving that goal. This administrative supplement will
add a rigorous and formal ELSI component to HPRC’s ongoing technical and scientific efforts. It will embed
scholars and experts from the appropriate disciplines into every aspect of the project. This proposal was
developed in direct response to specific recommendations made by the HPRC’s Scientific Advisory Board
(SAB), which noted in January 2021 that ELSI issues must be anticipated and addressed in the early stages of
the project, to foster trust and promote inclusion. The SAB also recognized the importance of incorporating
lessons learned from previous high-profile projects in human population genetics, which can be accomplished
by identifying and responding to ELSI questions as key decision points emerge in the project. Building on initial
efforts of project advisors, we will create an “embedded ELSI” team to work with the HPRC leadership and
investigators as a supplement to NHGRI grant 5U01-HG010971 (David Haussler, UC, Santa Cruz, PI). The
proposed work is within the scope of the original project aims; however, this supplement will help clarify the
objectives of the project with regard to representation of human genomic diversity and will work to overcome
concerns raised by the development of a reference genome that reflects a broad range of human diversity. The
ELSI team will be led by four experienced principal investigators: Barbara Koenig (UCSF), Robert
Cook-Deegan (Arizona State), Nanibaa’ Garrison (UCLA), Karen Miga (UC Santa Cruz), and a Co-Investigator
to direct the team’s research initiatives, Alice Popejoy (UC Davis). To accomplish its overarching objectives, the
team will convene an Ethics Working Group (EWG) with additional experts in relevant disciplines, which will
include research ethics, law, social sciences, demography, and population genetics. The EWG will meet
regularly for one year, offering the HPRC team advice in real time through participation in standing working
group calls and will provide guidance about concerns—both anticipated and unanticipated—related to consent
procedures, ethical and scientific selection of study samples, engagement of communities, and definition(s) of
diversity to be used selecting and reporting on genetic diversity. It will inventory parallel projects going on
globally, and it will prepare a list of topics and background materials for a subsequent worksh...

## Key facts

- **NIH application ID:** 10423448
- **Project number:** 3U01HG010971-03S1
- **Recipient organization:** UNIVERSITY OF CALIFORNIA SANTA CRUZ
- **Principal Investigator:** Evan Eichler
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $246,210
- **Award type:** 3
- **Project period:** 2019-09-18 → 2024-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10423448

## Citation

> US National Institutes of Health, RePORTER application 10423448, ELSI Administrative Supplement - Center for Human Reference Genome Diversity (3U01HG010971-03S1). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10423448. Licensed CC0.

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