Racial disparities in cancer genetic counseling being examined 

Erin P. Carmany, MS, CGC

Erin P. Carmany, M.S., CGC, Associate Professor of Molecular Medicine and Genetics Associate Director, Genetic Counseling Masters Program

A new study to determine whether patient race affects healthcare quality as viewed through a genetic counseling perspective is just getting underway as a collaboration involving Center faculty member Erin Carmany, M.S., CGC. The study, "Cancer health disparities and genetic counseling encounters (CHANGE)," aims to compare and contrast the nature of genetic counseling encounters and patient-centered outcomes between Black and White patients in a genetic counseling clinical setting. This study will include recruitment at genetic counseling clinics in Richmond, Virginia, and Karmanos Cancer Institute in Detroit.  

Carmany (Associate Professor of Molecular Medicine and Genetics and Associate Director of Genetic Counseling Master's Program) is part of a collaboration that was recently awarded an R01 grant from the National Cancer Institute and included researchers at Virginia Commonwealth University (Principal Investigators: Nao Hagiwara, Ph.D. and John Quillin, Ph.D., CGC) and WSU/Karmanos Cancer Institute (Co-Investigator: Susan Eggly, Ph.D.). Carmany and Eggly are overseeing patient and provider recruitment and data collection in Detroit.  

"We are going to be conducting a mixed-methods study, looking at both qualitative and quantitative data analyses," says Carmany. Patients with either a personal or family history of cancer referred for genetic counseling will be surveyed prior to their initial appointment for their perceptions of racial discrimination, general trust in genetic counseling providers, and satisfaction with the healthcare provided by the health system. This approach is expected to allow a robust and comprehensive collection of data, important for investigating a complex issue like racial healthcare disparities.  

Following the initial survey, patient genetic counseling sessions will be recorded and then analyzed for provider communication style and overall patient-provider communication by studying non-verbal and verbal markers of communication. A post-visit survey will be given to both provider and patient to measure what they call the therapeutic alliance – the cooperative and positive relationship between a healthcare provider and patient. Additionally, the patient post-visit survey will include measures of provider-specific trust, provider-specific satisfaction, and patient empowerment (whether the patient felt in control of the situation and was able to take appropriate actions given their current circumstances).  

The implications of this study are important at both a global and national level as healthcare providers, including genetic counselors, seek to bridge gaps in healthcare for their diverse patient populations. Carmany said this study could provide further information on the extent of healthcare disparities in genetic counseling between Black and White patients and provide insight into the drivers of those disparities and their impacts on patient-centered outcomes. "We are seeing differences in our patient populations," she said. "It's important to understand why these differences are present. Because genetic counseling is such a communication-based field, it is important to evaluate how provider communication styles differ in sessions and what impact those differences have on patient outcomes." She hopes this study can eventually help identify areas for improvement in how genetic counseling providers communicate with patients to minimize provider biases and improve patient outcomes.  

"Because we are at Wayne State and because of our position in an urban environment, we have always had an emphasis on cultural competency and diversity. This study is an extension of the values promoted by the WSU School of Medicine and will contribute to the broader discussion of healthcare disparities," Carmany added.