‘I’m not sure if they speak to everyone about this option’: analyzing disparate access to and use of genetic health services in the US from the perspective of genetic counselors

Abstract

Much research has documented disparities in access to and uses of health care services in the US. With the rise of genomic medicine and its use of complex technology, some scholars are concerned that such inequalities of health care will not only continue but also grow. Drawing on 27 semi-structured interviews with front-line genetic workers – master’s-level genetic counselors – this qualitative study explores the factors they view as contributing to variable uptake of genetic health services among US population groups. Patient-centered factors such as attitudes, norms, and education were perceived by some genetic counselors as explanations for disparities in uptake of genetic services. However, genetic counselors more frequently discussed structural and institutional factors (e.g. cost, insurance, type and location of hospital/clinic, and/or staffing issues) when accounting for different rates of usage of genetic services among populations. The prominence of structural impediments to access found in genetic counselors’ narratives about population differences in the uptake of genetic services suggests that genetic medicine could exacerbate rather than ameliorate health disparities in the US.