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

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.