# The Ethics of Inclusion: Diversity in Precision Medicine Research

> **NIH NIH R01** · COLUMBIA UNIVERSITY HEALTH SCIENCES · 2020 · $670,541

## Abstract

PROJECT SUMMARY
A major challenge for precision medicine research is including historically under-represented groups in
numbers sufficient to ensure statistically valid inferences of the influence of relevant risk factors,
including genetic contributions to disease risk. Precision medicine researchers have recognized the
critical need to enhance diversity and have implemented a wide variety of approaches to achieve this.
All such approaches, however, are shaped by stakeholders’ understandings of what kinds of diversity
matter, the local logistical constraints under which precision medicine research is actually being
conducted, and the responses of communities to those approaches. Investigating these complex
factors from the perspectives of multiple stakeholders in precision medicine research will be essential to
effectively address longstanding inequities in genomic and related forms of precision medicine
research. This application seeks to take advantage of the current proliferation of diversity and inclusion
practices to study their heterogeneity, commonalities, and effects on diversifying participation in
precision medicine research. We will determine through in-depth analyses of PMR studies how
concepts such as definitions of diversity (e.g. genetic ancestry markers, self-reported race and
ethnicity) impact practices such as retention, engagement, and return of results. Taking a lifecourse
perspective to research relationships, we aim to assess how approaches towards diversity and
inclusion are managed in tandem with other research goals and the implications of specific trade-offs
that result. To achieve our study objectives, we will fulfill the following aims: (1) identify scientific and
sociopolitical justifications for goals of inclusion and conceptual definitions of diversity in precision
medicine research; (2) determine how scientific, social and technical factors influence the
operationalization of diversity and implementation of inclusion in precision medicine research; and (3)
engage stakeholders to create data-informed guidance that describes the strengths and weaknesses of
diversity and inclusion decisions and practices in precision medicine research.

## Key facts

- **NIH application ID:** 9957183
- **Project number:** 5R01HG010330-04
- **Recipient organization:** COLUMBIA UNIVERSITY HEALTH SCIENCES
- **Principal Investigator:** Sandra Soo-Jin Lee
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $670,541
- **Award type:** 5
- **Project period:** 2019-02-23 → 2022-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9957183

## Citation

> US National Institutes of Health, RePORTER application 9957183, The Ethics of Inclusion: Diversity in Precision Medicine Research (5R01HG010330-04). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/9957183. Licensed CC0.

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