Covering medical care costs for participants in the eMERGE Network: Challenges for equity and implementation

Laura J Rasmussen-Torvik¹, Katherine E Bonini², Margaret H Harr³, Mohammad Ali Abbass⁴, Hana Bangash⁵, Harris T Bland⁶, Brenna M Boyd⁷, Wendy K Chung⁸, Ellen W Clayton⁹, Stuart J Cohen¹⁰, John J Connolly³, Catherine Gascoigne¹¹, Valentina Hernandez¹², Ingrid A Holm⁸, Martha Horike-Pyne¹³, Gail P Jarvik¹³, Elizabeth W Karlson¹⁴, Iftikhar J Kullo⁵, Nita A Limdi¹⁵, Mary E Maradik¹⁶, Elizabeth M McNally¹⁶, Emma Perez¹⁷, Cynthia A Prows¹⁸, Gabriel Q Shaibi¹⁹, Chunhua Weng²⁰, Robb K Rowley²¹, Josh F Peterson⁶, Jodell E Linder²², Maya Sabatello²³

Affiliations

¹ Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL; Center for Genetic Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL. Electronic address: ljrtorvik@northwestern.edu.
² Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY.
³ Center for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, PA.
⁴ Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL.
⁵ Department of Cardiovascular Medicine, Mayo Clinic, Rochester, MN.
⁶ Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN.
⁷ Department of Pediatrics, Columbia University, New York, NY.
⁸ Department of Pediatrics, Harvard Medical School, Boston, MA; Boston Children's Hospital, Boston, MA.
⁹ Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN.
¹⁰ Department of Medicine, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL.
¹¹ Insittue for Public Health and Medicine, Vanderbilt University Medical Center, Nashville, TN.
¹² Collaborative Research, Mountain Park Health Center, Phoenix, AZ.
¹³ Department of Medicine, University of Washington School of Medicine, Seattle, WA.
¹⁴ Department of Medicine, Brigham and Women's Hospital, Boston, MA.
¹⁵ Department of Neurology, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL.
¹⁶ Center for Genetic Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL.
¹⁷ Department of Personalized Medicine, Brigham and Women's Hospital, Boston, MA.
¹⁸ Department of Pediatrics, Cincinnati Children's Hospital Medical Center; University of Cincinnati, Cincinnati, OH.
¹⁹ Center for Health Promotion and Disease Prevention, Arizona State University, Phoenix, AZ.
²⁰ Department of Biomedical Informatics, Columbia University, New York, NY.
²¹ Division of Genomic Medicine, National Human Genome Research Institute, Bethesda, MD.
²² Vanderbilt Institute of Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN.
²³ Department of Medicine, Columbia University, New York, NY; Department of Medical Humanities and Ethics, Columbia University, New York, NY.

PMID: 40391568
PMCID: PMC12318664 (available on 2026-05-16)
DOI: 10.1016/j.gim.2025.101457

Covering medical care costs for participants in the eMERGE Network: Challenges for equity and implementation

Laura J Rasmussen-Torvik et al. Genet Med. 2025 Aug.

. 2025 Aug;27(8):101457.

doi: 10.1016/j.gim.2025.101457. Epub 2025 May 16.

Authors

Affiliations

¹ Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL; Center for Genetic Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL. Electronic address: ljrtorvik@northwestern.edu.
² Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY.
³ Center for Applied Genomics, Children's Hospital of Philadelphia, Philadelphia, PA.
⁴ Department of Surgery, Northwestern University Feinberg School of Medicine, Chicago, IL.
⁵ Department of Cardiovascular Medicine, Mayo Clinic, Rochester, MN.
⁶ Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN.
⁷ Department of Pediatrics, Columbia University, New York, NY.
⁸ Department of Pediatrics, Harvard Medical School, Boston, MA; Boston Children's Hospital, Boston, MA.
⁹ Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN.
¹⁰ Department of Medicine, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL.
¹¹ Insittue for Public Health and Medicine, Vanderbilt University Medical Center, Nashville, TN.
¹² Collaborative Research, Mountain Park Health Center, Phoenix, AZ.
¹³ Department of Medicine, University of Washington School of Medicine, Seattle, WA.
¹⁴ Department of Medicine, Brigham and Women's Hospital, Boston, MA.
¹⁵ Department of Neurology, Heersink School of Medicine, University of Alabama at Birmingham, Birmingham, AL.
¹⁶ Center for Genetic Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL.
¹⁷ Department of Personalized Medicine, Brigham and Women's Hospital, Boston, MA.
¹⁸ Department of Pediatrics, Cincinnati Children's Hospital Medical Center; University of Cincinnati, Cincinnati, OH.
¹⁹ Center for Health Promotion and Disease Prevention, Arizona State University, Phoenix, AZ.
²⁰ Department of Biomedical Informatics, Columbia University, New York, NY.
²¹ Division of Genomic Medicine, National Human Genome Research Institute, Bethesda, MD.
²² Vanderbilt Institute of Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN.
²³ Department of Medicine, Columbia University, New York, NY; Department of Medical Humanities and Ethics, Columbia University, New York, NY.

PMID: 40391568
PMCID: PMC12318664 (available on 2026-05-16)
DOI: 10.1016/j.gim.2025.101457

Abstract

Purpose: To investigate the complexities of covering study-recommended medical care costs for individuals (in order to prevent lack of adherence due to financial reasons), which have received little attention.

Methods: We explored the deliberations, decisions, and challenges faced by the Electronic Medical Records and Genomics (eMERGE) Network during the implementation of a genomic research project recommending clinical care based on high-risk results defined largely by polygenic risk scores. Two surveys were disseminated to eMERGE sites: to identify preferences about payment for specific care recommendations (survey 1) and to understand the operational processes of covering medical care costs (survey 2).

Results: Paying for a subset of care recommendations for the funded study duration was identified as the most feasible approach for covering medical care costs for participants who received high-risk genomic results. Each eMERGE site, by necessity, used diverse approaches to pay for medical care costs.

Conclusion: eMERGE researchers balanced competing concerns about bias, equity, study design, regulatory compliance, and cost in designing a unified approach to cover some of the recommended medical care costs in the study. Many implementation challenges were encountered. Findings can inform researchers and regulatory bodies about the implications and complications of covering medical care costs in translational research studies focused on prevention.

Keywords: Genomic medicine; Research compliance; Research ethics; Study design; Translational genomics.

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Conflict of interest statement

Conflict of Interest Josh F. Peterson is a consultant to Myome; Elizabeth M. McNally is or has been a consultant to Amgen, Cytokinetics, PepGen, Tenaya and is a founder of Ikaika Therapeutics and these activities are unrelated to the content of this manuscript; Emma Perez is a paid consultant for Allelica Inc; and Maya Sabatello is a member of the Institutional Review Board of the All of Us Research Program. All other authors declare no conflicts of interest.

References

1. Sperber NR, Carpenter JS, Cavallari LH, et al. Challenges and strategies for implementing genomic services in diverse settings: experiences from the Implementing GeNomics In pracTicE (IGNITE) network. BMC Med Genomics. 2017;10(1):35. doi: 10.1186/s12920-017-0273-2 - DOI - PMC - PubMed
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1. Linder JE, Allworth A, Bland HT, et al. Returning integrated genomic risk and clinical recommendations: The eMERGE study. Genet Med 2023;25(4):100006. doi: 10.1016/j.gim.2023.100006 - DOI - PMC - PubMed
1. Srinivasan T, Sutton EJ, Beck AT, et al. Integrating Genomic Screening into Primary Care: Provider Experiences Caring for Latino Patients at a Community-Based Health Center. J Prim Care Community Health. 2021;12:21501327211000242. doi: 10.1177/21501327211000242 - DOI - PMC - PubMed
1. NHGRI, https://grants.nih.gov/grants/guide/rfa-files/rfa-hg-19-013.html. Accessed August 2024.

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Covering medical care costs for participants in the eMERGE Network: Challenges for equity and implementation

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Covering medical care costs for participants in the eMERGE Network: Challenges for equity and implementation

Authors

Affiliations

Abstract

Conflict of interest statement

References

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