Illustrative image for All of Us Research Program Barriers to Caring for Patients with Genetic Findings that Require Medical Attention

All of Us Research Program: Barriers to Caring for Patients with Genetic Findings that Require Medical Attention

Principal Investigators: Carolyn P. Neuhaus, Johanna T. Crane, Albany Medical College

Co-Investigators: Nancy Berlinger, Karen J. Maschke

Funder: Office of the Director, National Institutes of Health

The opportunity to find out health-related genetic information about themselves is a key motivation for many people who have volunteered for the National Institutes of Health’s All of Us Research Program, an unprecedented initiative to collect genetic and other health-related data from at least one million people living in the United States. However, the prospect of returning genetic information is wrought with anxiety among clinics serving uninsured and underinsured patients because of barriers to accessing follow-up care. That is a key finding from our ongoing project, Understanding “Engagement” in the All of Us Research Program.

This project, a supplement to Understanding “Engagement,” aims to make progress toward mitigating the challenges of returning and following up on genetic results that require medical attention and are discovered as part of research in uninsured or underinsured patients. These patients are typically left of out advances in genomics because they cannot afford to follow up on research findings by getting medical care, and face myriad barriers to accessing specialized care for lifelong disorders (e.g. barriers with regard to transportation, childcare, obtaining time off from work, and following specialized diets). The project will recommend strategies to address theses barriers.The long-term goal of the project is to reduce racial, ethnic, and class health disparities by ensuring that all people benefit from advances in genomics.