Through a J.E.D.I. Lens

Through a J.E.D.I. Lens (Vol. 1 Issue 3): Pancreatic Cancer and Community Impact

By Jálin B. Johnson, director of the Office of Equity & Inclusion at the Salk Institute, and Dannielle Engle, Salk assistant professor and Helen McLoraine Developmental Chair

November is Pancreatic Cancer Awareness Month. The early detection of pancreatic cancer is often complicated by a more common condition known as pancreatitis, which is a benign inflammation of the pancreas that can look very similar to pancreatic cancer. Because there is no way to distinguish between pancreatitis and pancreatic cancer, there is no early detection test for pancreatic cancer.

In historically underrepresented and minoritized communities, early detection can be even more challenging due to an array of factors, including minimal access to healthcare (in both urban and rural areas), socioeconomic barriers, deficits in how information is communicated to the community, and a perceived lack of trust in the healthcare system.

Black Americans are more likely to be diagnosed with pancreatic cancer than any other racial or ethnic group, according to the Pancreatic Cancer Action Network. They state, "There are many reasons why the incidence rate of pancreatic cancer is higher for Black Americans. We don’t know what the cause of this disparity is, but factors related to systemic racism, the environment, access to nutritious food, and barriers to quality healthcare may play a role."

Likewise, a 2000-2018 population-based study led by Cedars-Sinai Medical Center researchers found that younger women of all races and ethnicities experienced a greater increase in pancreatic cancer incident rate compared to their counterpart men; however, younger Hispanic and Black women experienced a disproportionately greater increase. Hispanic women experienced a greater increase in incident rate compared to younger Black and White women.

Furthermore, Healio Gastroenterology reported on a recent study of pancreatic cancer trials, which offers an additional statistical window into some of these disparities.

“We know that recently there has been a heightened awareness of racial and ethnic disparities throughout our society. So, it really came as no surprise that these disparities are also present within scientific research and clinical trials. Our team wanted to know just how prevalent these disparities are within pancreatic cancer clinical trials,” Kelly Herremans, a surgical research fellow at the University of Florida College of Medicine, Gainesville, said during a press conference prior to a Digestive Diseases Week conference, as reported by Healio Gastroenterology. “We focused on this particular disease because certain racial and ethnic minorities such as Black Americans get pancreatic cancer more often, are diagnosed at younger ages, and die sooner.”

In line with the over-representation of white patients in clinical trials, we find that this also extends to patient models in laboratory research. Recognizing that pancreatic cancer is one of the deadliest cancers, both because it is often diagnosed late and because therapies are ineffective, Salk Assistant Professor Danielle Engle’s lab works to create models and representations that better illustrate the reality of what happens in pancreatic cancer patients. Even in her own work, Engle notes that more than 85% of the patient-derived organoids she and colleagues have generated are from white, non-Hispanic patients. Further, many studies do not even publish race information, highlighting a need for researchers to incorporate race, ethnicity, economic, and social factors into their work.

We believe that part of our training as scientists should include the community-building and engagement skills required to build trust and partnerships with historically marginalized communities.

When looking through a J.E.D.I. lens, we considered the following -

• Are the environmental impacts facing many communities of color being factored into studies of the causes of pancreatic cancer?


• At the 2021 American Association for Cancer Research Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved, researchers shared that common trial enrollment criteria may limit the generalizability of results and may not be medically justifiable. (HemOnc today, 2021).

What steps can be taken to encourage and facilitate more diverse and equitable representation in trials, thus decreasing disparities, and increasing survivorship?


• Lack of trust in the healthcare system commonly stems from historical injustices, such as the U.S. Public Health Service Untreated Syphilis Study at Tuskegee, in which researchers did not obtain informed consent from participants, all Black men, and participants were not offered available treatments, even after penicillin became widely available. (CDC, 2024)
  
  What steps can researchers and physicians take to help alleviate these concerns?

Following the funding –

• The Department of Defense Congressionally Directed Medical Research Programs Pancreatic Cancer Research Program recently released its anticipated funding opportunities for fiscal year 2024. One area that applicants must address is "Early detection research for pancreatic cancer, including the prevalence in individuals with pre-diabetes and diabetes and/or those in underserved ethnic and minority communities." (CDMRP March, 2024)