# Health equity in the development of somatic cell genome editors for retinal disease

> **NIH NIH U19** · UNIVERSITY OF WISCONSIN-MADISON · 2024 · $134,598

## Abstract

Summary/Abstract
The NIH Common Fund has currently funded somatic cell gene editing projects through the Somatic Cell Gene
Editing (SCGE) consortium, with the goal of translating gene editing into the clinic. At the December 2023
consortium kick-off, there were significant discussions about how the basic science grants could work towards a
health equity focus so that as projects reach the clinical trials phase, they are well positioned to ensure that the
ultimate translation of gene editing happens in a more equitable manner. The current proposal is a 1-year
administrative bioethics supplement to a U19 grant “The CRISPR Vision Program: Nonviral Genome Editing
Platforms to Treat Inherited Retinal Channelopathies” (PI K. Saha, University of Wisconsin-Madison) and will be
conducted jointly between investigators at ETH-Zurich and the Univ. of Wisconsin-Madison. The proposal will
both address bioethics capacity within the SCGE consortium and provide empiric data to address the specific
ethical issues of health equity and justice in somatic cell gene editing for inherited retinal disorders (IRDs). We
propose three aims. In Aim 1, we will perform a normative review of the health equity and justice issues
for somatic gene editing therapies. This aim will increase bioethics capacity in the SCGE by providing a
framework for future work within the consortium, and will also serve as a foundation for the empirical work in Aim
2. In Aim 2, we will identify the ethical attitudes of patients/family members who have lived experience
of retinal disease towards somatic gene editing, with a particular eye towards health equity and justice
issues. This empiric bioethics project will include up to 30 interviews (in English or Spanish) with persons who
have a lived experience of IRDs. Topics covered in these interviews will include participant views towards (1)
SCGE for IRDs and more broadly, (2) personal values, (3) individual and societal impacts of SCGE for visual
impairments, (4) clinical endpoints, (5) consideration of potential risk and benefit across the translational pathway
(clinical trials, early clinical availability), (6) information that they feel would be critical in order to provide informed
consent for a future clinical trial or clinical administration of genome editing for IRD. Finally, in Aim 3, we will
integrate the experiences of Aim 1 and 2 to construct guidance for the other SCGE grantees that will help
them consider the potential approaches toward community engagement and health equity in their future work.

## Key facts

- **NIH application ID:** 11064457
- **Project number:** 3U19NS132296-02S1
- **Recipient organization:** UNIVERSITY OF WISCONSIN-MADISON
- **Principal Investigator:** Krishanu Saha
- **Activity code:** U19 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $134,598
- **Award type:** 3
- **Project period:** 2023-05-16 → 2028-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/11064457

## Citation

> US National Institutes of Health, RePORTER application 11064457, Health equity in the development of somatic cell genome editors for retinal disease (3U19NS132296-02S1). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/11064457. Licensed CC0.

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