National Institutes of Health news about PBB partnership

Michele Marcus, Ph.D. – Lived Experiences Document and Validate a Community’s Struggle

October 21, 2021

Marcus is a professor of epidemiology, environmental health, and pediatrics at Emory University. (Photo courtesy of Emory University)

Michele Marcus, Ph.D., has over 20 years of experience conducting large studies in human populations to understand the health consequences of factors like psychosocial stress and exposure to pollutants.

After receiving graduate degrees in epidemiology at Columbia University, Marcus went to work at the Icahn School of Medicine at Mount Sinai. There, she witnessed the effects that contaminants, such as asbestos, lead, and organic solvents, had on worker’s health.

“An important part of my fundamental training in epidemiology was understanding that the environment was such a critical component of people’s health,” she reflected. “Working at Mount Sinai moved beyond just analyzing data. Meeting workers impacted by their on-the-job exposures changed my perspective to a personal one.”

Agricultural Disaster Leads to Lifelong Study

Now at Emory University, Marcus leads the NIEHS-funded Michigan PBB study, which has followed multiple generations enrolled in the Michigan PBB Registry for over 40 years.

“In 1973, livestock feed supplement was accidentally replaced with a fire retardant, leading to widespread contamination of meat and dairy products with PBBs,” explained Marcus. “Over 4,000 individuals with high likelihood of exposure were enrolled into the registry.”

PBBs are a class of chemicals suspected to disrupt endocrine function. The endocrine system regulates hormone processes in the human body, such as development of the brain and the growth and function of the reproductive system.

Marcus' mentors at the Mount Sinai School of Medicine, Irving Selikoff, M.D., and Philip Landrigan, M.D., led the initial studies of the PBB cohort and helped establish the registry in the late 1970s.

“I became involved with the cohort in the early 1990s when evidence about the long-term impacts of exposure to endocrine-disrupting chemicals was growing,” explained Marcus. “Unfortunately, we have documented impacts to the grandchildren of those exposed, which is why it is so important that we continue to work closely with the community to address their concerns moving forward.”

Community meetings were held across Michigan to ensure many different communities were involved and heard. (Photo courtesy of Michele Marcus)

When the state health department no longer had the resources to continue data management and outreach efforts, Marcus and her team stepped in. With the help of Melanie Pearson, Ph.D., co-director of the Community Engagement Core in the NIEHS-funded HERCULES Exposome Research Center at Emory University, they began hosting community meetings and met study participants face-to-face.

“In 2011 when we held our first community meeting, many people were very angry and felt abandoned because researchers who collected data never came back to talk to them,” said Marcus. “We asked community members to be our advisors and partners so we could make our continuation of the work meaningful to them and responsive to their concerns.”

Documenting Lived Experiences

“Our community partners guide our research,” said Marcus. “Their input helped us identify the need for listening and documenting their stories to understand the human toll that this incident had on their lives and to validate their experiences.”

They teamed up with Brittany Bayless Fremion, Ph.D., a historian at Central Michigan University, to collect oral histories from community members about their lived experiences and environmental exposures.

During one of their virtual community meetings, the group discussed a clinical trial aimed at speeding up the elimination of PBB from the body – something Marcus said she and her team would not have considered had it not been for community input. (Photo courtesy of Michele Marcus)

The research team is now analyzing those stories to better understand how people perceive environmental risks. After the recordings are transcribed and reviewed by participants, they will be donated to the Museum of Cultural and Natural History at Central Michigan University for use by educators, researchers, and community members.

Sharing Information

Input from the community has been used inform public health action. For example, in 2019, project collaborators hosted a legislative event to share the lessons learned from the PBB accident and ongoing community needs to inform state efforts in response to contamination.

After hosting the community meetings, the team realized that local doctors were unaware of the long-term health effects of exposure to PBBs, such as thyroid problems, breast cancer, and fertility issues. “We found that 60% of the people tested still had elevated PBB levels 40 years later,” said Marcus. “Community members told us that when they asked if certain health issues could be connected to PBB exposure, their physicians did not have any answers for them. So, we developed a clinician information sheet, which people can take to their doctors.”

Sustained Support Continues to Address Community Needs

Marcus stressed the importance of funding from NIEHS to address community concerns. She explained that following an interview she had with a local television station in Michigan, community members contacted her to express their concerns.

“Chemical workers and nearby residents had been sidelined from the Michigan PBB study in 1990 because they were exposed to multiple different chemicals,” said Marcus. “We met with multiple community leaders who expressed their strong desire to be brought back into the study, so we applied for supplemental NIEHS funding to evaluate their exposure to PBB and other chemicals and used metabolomic methods as part of our ongoing research on the cohort.”

Confirming the long-term health effects reported by community members in the PBB study, Marcus and collaborator Alicia Smith, Ph.D., also recently documented the underlying mechanism by which PBB exposure can lead to hormone-related health outcomes.

Funding from NIEHS allowed Marcus and team to continue the Michigan PBB Registry study and their engagement with study participants. They hold partner and community meetings, respond to inquiries from the community and clinicians, and regularly update their website and social media. They are also developing an education course for healthcare providers, policymakers, and citizens to increase local capacity to address exposure concerns in this underserved, mostly rural, population.

“We knew early on how meaningful this work would be,” said Marcus. “The community deserves to know what is happening and how to protect their health. This support will allow us to continue the work we started and create new tools to share research results with our stakeholders.”