# Sharing Aggregate Genomics Research Findings with Diverse Participants: A Pilot Study of an Innovative Design Strategy

> **NIH NIH U01** · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · 2020 · $161,500

## Abstract

PROJECT SUMMARY/ABSTRACT
Benefit sharing with participants and the public is an important ethical obligation in biomedical research, and
can include the return of individual and/or aggregate research results to participants. There is strong support
among funders, researchers, and participants for sharing aggregate results, which can include information
about study populations and conclusions about groups of participants. Sharing aggregate results demonstrates
respect and reciprocity, enhances public understanding of biomedical research, and may help to build trust in
the research enterprise – particularly in marginalized communities for whom historical and ongoing injustices
have led to mistrust of clinicians and biomedical research. In genomics research specifically, communicating
aggregate results may help to inform the public about the benefits and risks of broad data sharing, which is
essential for advances in clinical genomics. Despite these merits, however, aggregate results sharing remains an
uncommon practice in genomics research. Policies and best practices are urgently needed to ensure that
aggregate results sharing becomes the norm rather than the exception, and to guide the development of
materials that are appropriate and effective in diverse populations including those for low-literacy and non-
English speaking participants.
We propose a project that will develop and pilot test a collaborative, human-centered design approach to
sharing aggregate research results in Spanish and English with socioeconomically diverse families participating
in the Program in Prenatal and Pediatric Genomic Sequencing (P3EGS) at the University of California, San
Francisco (UCSF). P3EGS is a member of the NIH-sponsored Clinical Sequencing Evidence-Generating
Research (CSER) Consortium, whose six sites are studying the effectiveness of integrating genetic sequencing
into the clinical care of ancestrally diverse and medically underserved patients. P3EGS aims to assess the
clinical use of exome sequencing for patients with a suspected genetic condition. Preliminary findings indicate
that most P3EGS participants are interested in learning about aggregate results.
In the proposed project, we aim to: 1) Identify aggregate results of interest to participants through direct
engagement with 20 P3EGS participants and other stakeholder groups, including the CSER Stakeholder
Advisory Council, 2) Develop electronic and paper materials using a collaborative approach involving repeated
prototype development by a graphic artist with expertise in pairing stories and images, two rounds of
interviews to gather feedback from 24 P3EGS participants, and consultation with the P3EGS research team and
other key stakeholders, and 3) Assess the acceptability and relevance of the aggregate results materials through
interviews with 12 P3EGS participants who received either the electronic or paper version.
The long-term goal of the project is to inform future research and policies tha...

## Key facts

- **NIH application ID:** 10131446
- **Project number:** 3U01HG009599-04S1
- **Recipient organization:** UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
- **Principal Investigator:** Pui-Yan KWOK
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $161,500
- **Award type:** 3
- **Project period:** 2017-08-04 → 2022-11-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10131446

## Citation

> US National Institutes of Health, RePORTER application 10131446, Sharing Aggregate Genomics Research Findings with Diverse Participants: A Pilot Study of an Innovative Design Strategy (3U01HG009599-04S1). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10131446. Licensed CC0.

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