Genet Med. 2025 May 16:101457. doi: 10.1016/j.gim.2025.101457. Online ahead of print.
ABSTRACT
PURPOSE: The complexities of covering study-recommended medical care costs, so individuals are not limited from participating in translational research due to financial reasons, have received little attention.
MATERIALS AND METHODS: We explored the deliberations, decisions and challenges faced by the eMERGE Network during 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-I) and to understand the operational processes of covering medical care costs (Survey-II).
RESULTS: Paying for a subset of care recommendations for the funded study duration was identified as the most feasible approach to covering medical care costs for participants who received high-risk genomic results. Each eMERGE site, by necessity, employed diverse approaches to pay for medical care costs.
DISCUSSION: 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.
CONCLUSIONS: Findings can inform researchers and regulatory bodies about the implications and complications of covering medical care costs in translational research studies focused on prevention.
PMID:40391568 | DOI:10.1016/j.gim.2025.101457
