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Chickahominy T.R.U.T.H.: the beginning of a new community-academic partnership

Aug 29, 2022

Thomson and Tossas image

VCU Massey Cancer Center and the Virginia Chickahominy Tribe have joined together in a new community-academic partnership. Called Chickahominy T.R.U.T.H. (Trust, Research, Understand, Tell and Heal), this project responds to community concerns for a cancer cluster by investigating how community environmental risk factors impact perceived individual and collective cancer risk in Charles City County.

The co-principal investigators for Massey are Maria Thomson, Ph.D., member of the Cancer Prevention and Control research program and director of the Community Champions Program at Massey as well as associate professor in health behavior and policy at the VCU School of Medicine; and Katherine Tossas, Ph.D., M.S., director of catchment area data access and alignment, Harrison Endowed Scholar in Cancer Research and Cancer Prevention and Control research member at Massey.

“There was a member of the tribe who had been curious for many years and keeping tabs for many years on her own little notebook about different cancers that were popping up among her neighbors,” recalled Tossas. “And she had asked many different people over and over, ‘Is anyone noticing this?’” 

Truth LogoTossas shared that the tribal member reached out to Massey to inquire whether this could be a potential cancer cluster and if nearby industries could have contributed to it.

Responsive to the Chickahominy Tribe’s concern, Tossas and Thomson then began to look carefully at the density of cancer cases in Charles City County. They identified 15 different types of cancer, with 12 of them implicated in the literature with water or air pollution.

“The most prominent cancer was breast cancer, for sure,” Tossas said. “There were some prostate cancer cases, but there were also less common cancers, like bladder, brain, some leukemia, some liver cancers, lymphomas. There was a wide variety represented in that community. Bladder, brain, colon, kidney cancers, stomach cancers — all those cancers could be associated with water-pollution, for example.”

Tossas explained this could be due to a number of different factors.

“For example, there is a landfill in their community that opened in the ‘90s. Landfills produce leachates,” she said. “This is the seepage that occurs from the garbage rotting. The landfill is located near a local creek that flows into the Chickahominy River, which eventually merges with the James River. In this community, they estimate as many as about 85% of residents might be using well water. You can imagine that there is some plausibility for that seepage to get into their well water.”

Tribal leaders, along with Tossas and Thomson, directly crafted the objectives and methodology of the Chickahominy T.R.U.T.H. Project; it allows for a more in-depth analysis on the residents' concerns for cancers linked to environmental pollution and their responses to such concerns. As part of the project, they will also be offering comprehensive well water testing for participants and co-creating materials that incorporate the tribe’s traditional knowledge practices to disseminate information on water safety and cancer awareness, including conversations about genetic testing and counseling. 

Recently, the tribe and Massey received a grant to pursue that mission.

“We don't have specific hypotheses around what we'll find and what we're looking for,” Thomson noted. “This is really a data-gathering project that will focus on understanding people’s experiences with cancer. We want to see what is there and what information we can start to put together. We're working in partnership with the tribal leadership, and this is very much a conversation of what we want to collect. We will then have a T.R.U.T.H brigade; these are members of the community who we're going to train to conduct interviews, and they're going to go out and collect that data.”

Massey also provided grant-writing assistance for the Chickahominy leaders to submit a secondary sister grant, which was recently awarded to explore a possible genetic testing and counseling component.

However, not all tribal members were initially enthusiastic about genetic testing because of the longstanding history of medical experimentation on and misappropriation of health data from Native American communities.

Recognizing the hurtful past and continued caution against medical research, Massey researchers listened to the tribal members, their concerns and their needs.   

Tossas said that in her experience, community-academic partnerships are beneficial to both sides.

“I don’t like to say that we empower people, because I don’t empower you,” she stated. “You are already empowered, and my job is to stand with you in support of your power. Our hope with this project is that we stand with them in their power by providing this information. What they do with this information is up to them because in their power and in their interests, they can now use this to advocate for their TRUTH themselves.”

T.R.U.T.H. is currently recruiting volunteers to be a part of the health brigade to help conduct this large-scale study.

Thomson and Tossas explained how the collaboration began with the Chickahominy Tribe in an interview with participants of the Walter Lawrence Scholars Initiative (WLSI), a six-week internship Massey launched in July 2022 to cultivate career opportunities for diverse populations interested in writing, reviewing and evaluating cancer-relevant scientific writing and communications. The program’s namesake is Walter Lawrence Jr., M.D., Massey’s first director, who fought repeatedly for social justice and health equity in his life and career as a surgical oncologist.

Written by: Christine Lee, Walter Lawrence Scholar

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