Initiative to Boost Minority Representation in Genetics Research

Henry Ford Cancer Institute is launching a new, community-based initiative to significantly improve minority representation in cancer genetics research and clinical trials.

Supported by a $750,000 grant from Genentech, the Participatory Action for Access to Clinical Trials (PAACT) project will address various barriers to trust and participation in clinical trials.

Henry Ford will carry out the initiative alongside the Detroit Community-Academic Urban Research Center (Detroit URC), and will focus on clinical trials involving lung, breast, colorectal, and prostate cancers – all of which are more likely to cause death in African Americans than in other racial and ethnic groups.

Henry Ford will implement the project in partnership with community-based organizations and community leaders who are key stakeholders.

“By working with the community to help us understand attitudes about research, more minorities may be willing to enter clinical trials,” said Eleanor M. Walker, MD, PAACT co-investigator, and director of Breast Radiation Oncology and medical director of Integrative Services at Henry Ford.

Henry Ford serves a large African American population that could benefit from many of the promising genomic therapies researchers are currently investigating.

“The advent of promising novel therapies, including immunotherapy and recently discovered genetic therapies, create an urgency to improve clinical trial enrollment of African Americans with higher risk and poorer prognosis of cancer,” said Walker.

Diversifying representation in research on triple negative breast cancer will be a critical focus of the new initiative. Studies have shown that up to 80 percent of breast cancer patients in Africa and 25 percent of African American women are diagnosed with triple negative breast cancer, compared to ten to 15 percent of white women in the US.

Current studies are focusing on precision drugs and interventions based on individuals’ genetic markers.

“If tumors of African American women are not represented in clinical trials, it impairs our ability to provide patients with the best possible treatment options,” said Evelyn Jiagge, the principal investigator of the PAACT project, serves as the lead investigator of Henry Ford Breast Cancer Research.

“We can’t change the past, but we have to ask, ‘How do we work together to change the future?’ African Americans have told us they want to be present in the design of the clinical trial so they know what’s involved and who will be accountable.”

As part of the initiative, Henry Ford Health System will collaborate with community church leaders and the Ghana Association of Michigan.

“We believe our partnerships highlight collaborative research as a tool to address public health concerns,” said Donna M. Harris, director of community outreach at Grace Community Church in Detroit. 

Through these collaborations, leaders believe the initiative will better serve minority populations and research efforts.

“This project specifically addresses the underrepresentation of minority participation in research and we believe that by partnering, we will be able to engage our organization’s diverse East Michigan community to help address the challenges in cancer research and health systems,” said Emmanuel Addo, president of the Ghana Association in Michigan.

The challenges associated with COVID-19 could also be a benefit for researchers and participants.

“By creating focus groups online or through conference-calls, we may have higher enrollment and hear more voices from the community,” said Barbara Brush, PhD, a PAACT co-principal investigator and professor at the U-M School of Nursing. “People won’t need to worry about travel, weather conditions, childcare or gas money.” 

In addition to conducting focus groups and interviews in diverse communities, researchers will interview healthcare professionals to identify any biases and clarify any misunderstandings about the role of the healthcare system in non-involvement of blacks in clinical trials.

“We are excited for the support of Genentech to help us understand and respond to the persistent underrepresentation of African American participants in cancer clinical trials,” said Benjamin Movsas, MD, interim medical director, Henry Ford Cancer Institute.

“The PAACT approach has the potential to create more realistic treatments and improved outcomes for minority cancer patients by harnessing our local partnerships and resources to help us understand more about African American attitudes and abilities to participate in clinical trials.”

Based on the findings, PAACT will develop and test pilot interventions in the community and health system aimed at eliminating barriers to inclusion.

“We hope the solutions we find can be integrated into health systems and be scalable to other African American communities nationwide and people with African descent globally,” said Jiagge.