Lori Orlando, MD is spearheading an NIH-funded research initiative aimed at improving the use of Family Health History (FHH) in genomic medicine. The study, called the Genomic Medicine Risk Assessment Care for Everyone (GRACE), focuses on developing a scalable solution for integrating FHH-based risk assessments in clinical settings, with particular emphasis on low-resource and low-literacy populations.
FHH is crucial for identifying individuals at risk for hereditary conditions and contextualizing the results of genetic testing. However, it remains underutilized in clinical care due to numerous barriers, including the widespread belief that FHH is not critical for most patients. As a result, the collection of detailed FHH is not prioritized and/or there is a lack of tools to interpret and convert the data into actionable care plans. Dr. Orlando and her team aim to tackle this challenge by developing the Genomic Medicine Risk Assessment Care for Everyone (GRACE) model. This innovative system will combine FHH-driven risk assessment with a literacy-enhanced interface, family engagement tools, and a genetic testing delivery system. The goal is to increase the identification of high-risk individuals, improve testing rates, and encourage cascade screening among family members.
In previous studies, systematic FHH-based risk assessments identified 25% of unselected patients as meeting the criteria for actionable hereditary conditions. This study will address current barriers by creating a model that can be deployed in low-resource settings, ensuring broader access to personalized medicine. A randomized, pragmatic trial will be conducted at the University of Florida’s College of Medicine under the leadership of Alexander Parker, PhD, Senior Associate Dean, Research and Professor of Epidemiology and Urology. The trial aims to evaluate the model's effectiveness and outcomes, such as clinical utility, accessibility, genetic testing frequency, and cost-effectiveness.
Furthermore, Dr. Orlando received a supplemental award and will be working with Susanne Haga, PhD and Dr. Parker to collect a diverse range of participant perspectives to further inform development of a culturally-sensitive tool. By focusing on populations that have historically been underserved in genomic medicine, the study aims to make genetic testing and FHH-based risk assessments more accessible and equitable. The outcomes could significantly enhance the role of FHH in clinical decision-making, transforming how healthcare providers approach genetic risk and testing.