Individual Breast Cancer Risk Assessment in Underserved Populations: Integrating Empirical Bioethics and Health Disparities Research

Abstract

Research suggests that individual breast cancer risk assessment may improve adherence to recommended screening and prevention guidelines, thereby decreasing morbidity and mortality. Further research on the use of risk assessment models in underserved minority populations is critical to informing national public health efforts to eliminate breast cancer disparities. However, implementing individual breast cancer risk assessment in underserved patient populations raises particular ethical issues that require further examination. After reviewing these issues, we will discuss how empirical bioethics research can be integrated with health disparities research to inform the translation of research findings. Our in-progress National Cancer Institute (NCI) funded study, How Do Underserved Minority Women Think About Breast Cancer?, conducted in the context of a larger study on individual breast cancer risk assessment, is presented as a model.

A Qualitative Study of Spanish-Speakers’ Experience with Dense Breast Notifications in a Massachusetts Safety-Net Hospital

“…13,14 Yet, we know that minority and underserved populations are less often aware of their breast cancer risk 38,39 and breast density, 21,40,41 and fewer receive breast cancer risk assessment. 42 This suggests that equitable care downstream of learning one's breast density has not yet been achieved. Achieving timely access to these services for non-English speakers is an important step in promoting equity in evidence-based breast cancer screening.…”

Organizational challenges to equity in the delivery of services within a new personalized risk-based approach to breast cancer screening

“…These authors highlighted the fact that complexities inherent to personalized risk assessment could disadvantage people from certain ethnic and socioeconomic groups due to a lower uptake (Chowdhury et al 2013). Anderson & Hoskins maintained that more research "on the use of risk assessment models in underserved minority populations is critical to informing national public health efforts to eliminate breast cancer disparities" (Anderson and Hoskins 2012). They supported their claim by the knowledge gap of how the relationships between breast cancer and genetics can affect underserved minority women.…”

“…More specifically, the literature has reported that: risk perception is affected by health literacy, health numeracy, and cultural beliefs (Anderson and Hoskins 2012); limited health literacy poses a particular challenge to communicating with underserved communities about genomics (Lea et al 2011); people with lower health literacy may not be able to take advantage of precision medicine in the same ways as those with higher health literacy (Ferryman and Mikaela 2018); risk is a difficult concept that is not well understood by the public (Lea et al 2011); and even a well-educated population might not fully understand the terminology associated with genetic testing (Hooker et al 2014).…”

“…Because risk-based screening using genomic factors is a radical new approach with regard to screening programs, various organizational issues need to be considered prior to implementation (Dent et al 2013). Equity in the delivery of services is one of the organizational issues that could challenge the implementation of this approach in current screening programs (Anderson and Hoskins 2012;Hall et al 2014;McGowan et al 2014; UK Government, Department of Health 2017). Equity is a fundamental value of the Canadian health system, and means that "citizens get the care they need, without consideration of their social status or other personal characteristics such as age, gender, ethnicity or place of residence" (Romanow 2002).…”

“…Although some potential equity issues have already been identified in the literature (Anderson and Hoskins 2012;McClellan et al 2013;Hall et al 2014;McGowan et al 2014; UK Government, Department of Health 2017), they may not be automatically transposable to the approach under study. The specificities that might prevent transposition of prior results include: the type of genomic markers used (e.g.…”