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The Role of State Health Agencies in Mitigating Disparities in Access to Clinical Genetic Services

Mon, August 13, 4:30 to 6:10pm, Philadelphia Marriott Downtown, Floor: Level 4, Franklin Hall 7

Abstract

Advancements in and availability of genetic technologies have significant potential to improve public health by identifying individuals’ risk of hereditary cancer syndromes (e.g. Hereditary Breast and Ovarian Cancer Syndrome and Lynch Syndrome) for the recommendation of preventative interventions. However, scholars are concerned that the advent of genomic medicine could potentially exacerbate health disparities because of differential access to clinical genetic services. State Health Agencies (SHAs) develop public health genomics programs (PHGs) to advance genomic medicine; yet, there is limited research on their approaches and engagement with health disparities. This study considers the case of public health genomics to examine the strategies deployed by SHAs in attempt to mitigate and/or forestall disparities in the utilization of genomics medicine. We compare PHG programs in three states: Utah, Michigan, and Connecticut, analyzing 85 in-depth interviews with SHA internal and external collaborators and program documents. We find that each SHA implemented population-level approaches to identify individuals who carry genetic variants that increases risk of hereditary cancers and to recommend clinical services. However, each of the three SHAs pursued different strategies to reach specific subgroups who faced barriers in accessing genetic services; these strategies varied across states given demographics of the state population, state-level partnerships, and availability of healthcare services. Our findings illustrate the imperative of tailoring PHG programs to local demographic characteristics and existing community resources. Furthermore, our study highlights how integrating genomics into public health will require multilevel, multisector collaboration to optimize efficacy and equity.

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