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NCI-funded project aims to reduce racial disparities in cancer genetic counseling

Sep 13, 2022

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A project led by Virginia Commonwealth University researchers and funded last month by the National Cancer Institute, part of the National Institutes of Health, aims to reduce racial cancer disparities in the United States by studying what happens during the genetic counseling process that results in different outcomes for Black and white patients.

According to data from the NCI, patients who are Black/African American have higher death rates than all other racial and ethnic groups for many types of cancer. For instance, Black women are more likely to die of breast cancer than white women, and Black men are twice as likely as white men to die of prostate cancer. The NCI says efforts addressing the less frequent use of proven screening tests and the higher rates of late-stage diagnoses of cancer in certain populations — both examples of ongoing health disparities — are necessary to reduce the racial and ethnic health disparities gap in cancer outcomes. Cancer genetic counseling — when a genetic counselor evaluates a patient’s family history for risks of inherited cancer and provides guidance on the patient’s next steps for screening and management — is a part of that screening and diagnosis process.

“Despite an increasing discourse about racial disparities in the genetic counseling process, what happens during the genetic counseling session that could contribute to the documented disparities still remains unknown,” said Nao Hagiwara, Ph.D., principal investigator for the project and an associate professor in the Department of Psychology at VCU’s College of Humanities and Sciences. “Our project is designed to address the critical first step in reducing racial disparities in the genetic counseling process — comparing and contrasting the nature of genetic counseling encounters and patient-centered outcomes between Black and white patients in clinical settings.”

Hagiwara will lead the project, “Racial Disparities in Cancer Genetic Counseling Encounters in the Naturalistic Clinical Setting,” alongside co-principal investigator John Quillin  , Ph.D., a genetic counselor and member of the Cancer Prevention and Control research program at VCU Massey Cancer Center. The project will receive an estimated $3 million in grant funding over five years, awarded in August by the NCI.

The project is part of “CHANGE (Cancer Health disparities ANGenetic counseling Encounters),” an ongoing collaboration between Hagiwara and Quillin, both affiliate faculty members of VCU’s Center on Health Disparities  . The team’s project will provide a comprehensive assessment of how genetic counselors’ training, demographics, attitudes and beliefs factor into aspects of the cancer genetic counseling process, such as how they communicate with patients and what topics they discuss.

The research, Hagiwara said, will expand the patient-genetic counselor communication research beyond the standard in-person clinical encounters by also examining virtual clinical encounters. The team, which includes researchers from VCU and Wayne State University and a community-based consultant, will analyze video recordings of cancer genetic counseling visits, data from pre- and post-visit surveys and data from medical chart reviews.

“Despite decades of effort to reduce racial cancer disparities, Black people continue to die from cancer at higher rates than any other U.S. racial group,” said Hagiwara, who also serves as an affiliate faculty member with VCU’s Center for Cultural Experiences in Prevention.

“Because prevention is the key to the cost-effective and long-term control of cancer, the potential for cancer genetic counseling to play a central role in reducing racial cancer disparities is high,” said Quillin, who is also an associate professor at the VCU School of Medicine. “Findings from this research could have an immediate impact on genetic counseling training and practice.”

The project will evaluate factors such as patients’ trust in genetic counselors, satisfaction with counseling sessions and subsequent genetic testing uptake.

Depending on the team’s findings, educators in the genetic counseling field will be able to tailor their coursework and training programs to replace poor communication practices with better ones — practices “positively associated with patient-centered outcomes,” Hagiwara said. The CHANGE team also hopes to provide a list of clinical discussion topics that should be discussed and ones that can be left out of cancer genetic counseling session discussions.

“In the long-term, improving genetic counselors’ communication behaviors and styles will result in more positive relationships between genetic counselors and Black patients overall, reducing the racial disparities in the genetic counseling process,” Hagiwara said.

The team includes Hagiwara; Quillin; co-investigators Erin Carmany and Susan Eggly, Ph.D., of Wayne State University; co-investigator Shawn Jones, Ph.D., an assistant professor in the Department of Psychology at VCU; co-investigator Yongyun Shin, Ph.D., an associate professor in the Department of Biostatistics at VCU’s School of Medicine; and consultant Lindsay Bryant, a community health educator in Richmond.

The CHANGE team completed a pilot study with funding from the VCU College of Humanities and Sciences Seed Awards and National Society of Genetic Counselors’ Cancer Special Interest Group. They received additional guidance from the C. Kenneth and Dianne Wright Center for Clinical and Translational Research at VCU.

“The CHANGE study serves as the first step of our program of collaborative research that aims to transform curriculum and training programs for genetic counselors so that they can play a central role in reducing racial cancer health disparities,” Quillin said.

Written by Mary Kate Brogan.

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