# Clinical and Translational Science Award

> **NIH NIH UL1** · COLUMBIA UNIVERSITY HEALTH SCIENCES · 2024 · $161,384

## Abstract

Project Summary/Abstract
In response to NOT-OD-24-031 Notice of Special Interest (NOSI, we propose to conduct research on bioethical
issues in the return of individual research results (IRR) that would support the development of an evidence
base to inform future policy directions. We intend to capitalize on a unique opportunity to assess the views of a
large number of research participants at Columbia University Irving Medical Center (CUIMC) who constitute an
unusual sample in two critical ways: 1) they are highly diverse; and 2) all will already have received IRR as part
of the NHGRI-sponsored eMERGE-IV study. We will use this sample to explore the experiences and
preferences of people with lived experience of receiving their own research results. A consensus has evolved
that IRR should be offered for return to research participants, as summarized in a 2018 report by the National
Academies of Science, Engineering and Medicine. Most of the extant studies address the return of
genetic/genomic results and show a strong desire to receive individual results and largely benign responses to
those results. Although outside the realm of genetics the body of literature on return of research results is much
smaller (e.g., for receipt of disease-associated biomarkers), similar albeit somewhat more variable findings
have been demonstrated. Participants’ consistent preferences to receive individual research results have led to
calls to focus future research on the major outstanding questions involved in return of results: which results
should be offered for return, when should results be returned, how should results be returned, and what
participant characteristics may help to identify and satisfy participant preferences? Ascertaining experienced
participants’ views on these issues is the key focus of this proposal, expanding the focus to a broader range of
research results (e.g., biomedical markers of health, behavior, and environmental exposures) and analyzed
through four Specific Aims exploring: 1) How do research participants’ preferences for return of individual
research results vary by type of result? 2) How are participants’ preferences affected by their demographic
characteristics, including race/ethnicity, education, income, and health insurance status? 3) To what extent are
participants’ preferences for return of individual research results affected by their perceptions of the potential
benefits and risks of their receipt? 4) What are participants’ preferences for the means of IRR and the
information and support that should accompany them? Our results will inform future studies, policies and
practices for the return of study results at Columbia, within the CTSA consortium, and across the larger
biomedical community.

## Key facts

- **NIH application ID:** 11064191
- **Project number:** 3UL1TR001873-09S1
- **Recipient organization:** COLUMBIA UNIVERSITY HEALTH SCIENCES
- **Principal Investigator:** Muredach P Reilly
- **Activity code:** UL1 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $161,384
- **Award type:** 3
- **Project period:** 2022-08-01 → 2026-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/11064191

## Citation

> US National Institutes of Health, RePORTER application 11064191, Clinical and Translational Science Award (3UL1TR001873-09S1). Retrieved via AI Analytics 2026-06-11 from https://api.ai-analytics.org/grant/nih/11064191. Licensed CC0.

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