# Testing scalable communication modalities for returning breast cancer genetic research results to African American women

> **NIH NIH R01** · BOSTON UNIVERSITY MEDICAL CAMPUS · 2021 · $1,043,560

## Abstract

ABSTRACT
National initiatives in precision medicine, such as the All of Us Research Program, have set ambitious plans
to establish a research cohort of one million or more participants and enable a new era of medicine that
empowers patients, researchers, and providers to work together toward development of individualized
treatments. A central challenge to large-scaled precision medicine research is the return of individual genetic
research results to study participants. Yet, approaches to scale the return of clinically actionable genetic results
to large cohorts have not been well-tested to date. The magnitude of this endeavor has renewed concerns
about the shortage of qualified genetic counselors for this task. Rigorous research efforts are thus needed to
test the efficacy of alternate models for genetic results disclosure, which has widespread implications for how
precision medicine research might yield direct benefits for study participants. We propose to conduct a
randomized controlled trial (RCT) within the Black Women's Health Study (BWHS) to test alternate
communication modalities for results disclosure. The BWHS is an ongoing prospective cohort study of 59,000
self-identified black women from across the United States who have been followed since 1995. Targeted
sequencing of over 4000 women within the cohort for BRCA1/2 and other known or suspected high and
moderate penetrance genes opens up the possibility of returning breast cancer genetic results to BWHS
participants and examining the clinical utility of genetic results return. The primary aim of the proposed
research project is to compare the efficacy of two communication modalities for returning breast cancer genetic
research results to African American women: 1) a conventional modality that entails telephone disclosure by a
licensed genetic counselor, and 2) an online self-guided modality that entails returning results directly to
participants, with optional genetic counselor follow-up via telephone. Secondary aims of this study will examine
1) moderators of the intervention impact and 2) psychosocial, sociodemographic, and clinical predictors of
result uptake. This study is uniquely situated to provide critical empirical evidence on the effectiveness of
alternate models for genetic results return and provide further insight into the factors influencing uptake of
genetic information among African American women. Study findings will inform ongoing efforts to establish
scalable approaches for effective return of genetic research results, and increase access to personal health
information among African American women.

## Key facts

- **NIH application ID:** 10191042
- **Project number:** 5R01MD014312-02
- **Recipient organization:** BOSTON UNIVERSITY MEDICAL CAMPUS
- **Principal Investigator:** Julie R Palmer
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $1,043,560
- **Award type:** 5
- **Project period:** 2020-06-12 → 2024-01-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10191042

## Citation

> US National Institutes of Health, RePORTER application 10191042, Testing scalable communication modalities for returning breast cancer genetic research results to African American women (5R01MD014312-02). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10191042. Licensed CC0.

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