Healing Communities: The Importance of Inclusive Medical Research
By Kelley Northam
When physicians first don their white coats and enter the medical profession, they traditionally recite the Hippocratic Oath, pledging to uphold ethical standards. A slice of the oath published by Penn State College of Medicine reads: “I shall try to establish a friendly relationship with my patients and shall accept each one in a nonjudgmental manner, appreciating the validity and worth of different value systems and according to each person a full measure of human dignity.”
While the language has varied since Hippocrates—known as the father of medicine—likely wrote it over two thousand years ago, the oath’s principle of do no harm has remained the same. However, history has shown us harm has been done and part of the healing can be accomplished through more inclusive medical research.
Misses, Misdiagnoses, and Mistreatments
In August 2024, a historically taboo topic raised international outrage after researchers discovered toxic metals in tampons. Described in the article “Tampons as a source of exposure to metal(loid)s” published in the journal Environment International, a UC Berkeley team of researchers evaluated the concentrations of 16 metals in tampons and found traces of all 16, including arsenic and lead, across brands and product lines. While more research is needed to determine health effects, these toxic metals have no “safe” exposure level. Past heavy metal research has overwhelmingly linked exposure to numerous health problems, including cardiovascular, endocrine, and brain damage.
While these findings are concerning, many found it equally concerning that this research is the first of its kind. The tampon was patented in 1933 and became a product trusted by billions. In the United States today, 52 to 86 percent of people who menstruate use tampons, and yet, it took over 90 years to discover these risks.
Breast cancer has also been known for centuries, with descriptions dating back to approximately 3,500 BCE. While there have been numerous advancements in diagnoses and treatments, current trends indicate that there is far more work to be done. In 2022, the American Cancer Society reported that Black women are 41 percent more likely to die of breast cancer than white women. Breast cancer in Black women is also often diagnosed later compared to white women, and Black women with this diagnosis are expected to live five years less. The American Cancer Society also reported that they are twice as likely to die from uterine cancer and more likely to be diagnosed with stomach, liver, and pancreatic cancer than white women.
Making Inclusivity an Industry Standard
There is a myriad of other examples of these lapses in medical research, such as the AIDS crisis and when researchers withheld treatment from afflicted Black men during the Tuskegee syphilis study, to name even more. Women, people of color, and other communities have been understudied, underserved, and overlooked in medical research to the detriment of their financial, physical, and mental well-being.
Now more than ever, many scientists and healthcare professionals are working to make medical research more inclusive so that innovations and therapies benefit everyone. According to the article “Combating Bias in Medicine” published by Harvard Medical School, this work begins by recognizing and overcoming personal biases. The article suggests that researchers should look inward and reflect on their lived experiences and implicit values to uncover unconscious biases. After identifying blind spots, they should remain mindful of these biases, working to overcome them to provide a positive experience for every participant.
Distrust of healthcare officials is also a barrier to inclusion. Because many communities have troubled histories with medical professionals, they are less likely to want to participate in clinical trials and other studies. According to the “Achieving Diversity and Its Benefits in Clinical Research”policy forum published by the American Medical Association (AMA) Journal of Ethics, researchers should familiarize themselves with the cultural norms and beliefs of a study’s population. Using this knowledge, they can avoid assumptions and approach cultural differences with humility and empathy. To gain participants ethically, researchers should enact outreach plans that involve trusted community and institutional communication channels, such as places of worship or neighborhood associations. Community leaders and potential participants should also be involved in recruitment. Finally, they should frequently communicate progress and findings to support transparency and build trust.
Moving Medicine Forward—For Everyone
Many of these strategies have been implemented in Baltimore, Maryland, thanks to the African Ancestry Neuroscience Research Initiative. In a groundbreaking collaboration between Morgan State University (a historically Black university), the Lieber Institute for Brain Development at Johns Hopkins University, and local community leaders, researchers gained new neuroscience insights. As described in the STAT article “How a Baltimore neuroscience study is rewriting Black America’s relationship with medical research,” the purpose of the study was to better understand the biology behind certain neurological conditions, such as schizophrenia and depression, that are more common among those of African American descent.
They found that environmental factors, which refer to everything from pollution to discrimination, affected neurological wellness. These factors caused epigenetic (structural) changes to DNA and accounted for 15 percent of disease occurrence. The genes that determine the body’s immune response were also likely to be higher in people of African descent. Since stress can affect the immune system, it may make some neurological conditions more severe for Black Americans. This research opens the door to personalized therapies informed by genetic ancestry, environmental stressors, and lived experiences, which could improve health outcomes for all patients.
Another groundbreaking aspect is that this research was made possible by over one hundred Black Baltimoreans who entrusted researchers with the brains of their deceased loved ones as donations to the study. Alvin C. Hathaway Sr., co-founder of the African Ancestry Neuroscience Research Initiative, attested to this, saying that “we reasoned that if we could demonstrate the success of this model in Baltimore (a city with a largely Black population and a long history of racial trauma and mistrust of medical institutions), we could institute a model that is suitable to be applied throughout neglected communities across the nation.” Given the fraught history between Black communities and medical establishments, this study is an example of how to conduct inclusive medical research and its profound benefits.
And hope is on the horizon for more inclusive cancer research, as the American Cancer Society is conducting a new study to help remove barriers to preventing, diagnosing, and treating cancers in Black women. The VOICES of Black Women study is the most extensive study of its kind and plans to enroll over 100,000 Black women. The study will follow each participant for 30 years to observe how their medical histories, lifestyle, and experiences of racism affect their cancer risks. Once enrolled, participants will be asked to complete two surveys per year, providing updates on physical and mental health, stress levels, and whether they’ve experienced events of discrimination or racism.
These researchers recognize how Black communities have been treated and are striving to ensure that ethics remain at the forefront of the study. In the NBC News piece “Landmark study of cancer in Black women launches in 20 states, aiming to be largest ever,” co-principal investigator of VOICES, Dr. Alpa Patel, notes, “It’s been really front and center for us to ensure that we’ve partnered with Black women to understand how to build this study in a way that is respectful.” A few ways they’re fostering this respect is by allowing participants to abstain from providing medical records, keeping participant names hidden from published research, and having a review board provide ethical oversight. This research is an important step in transforming how cancer is treated and how Black women are treated in the medical community.
At Thermo Fisher Scientific, we’re working to advance equity in clinical research by helping train research and medical professionals on how to foster more inclusive trials. One example is our collaboration with the Schools of Medicine at Morehouse College and Stanford University on the Training Researchers to Advance Inclusion Networks (TRAIN) program. This segment of the program was designed to equip professionals with the historical context and evidence-based solutions they need to best interact with under-studied communities. Through classes, community meetings, and peer learning, we’re teaching them how to partner with communities to conduct studies, ultimately becoming a permanent part of the TRAIN curriculum.
From tampons to tumors, it’s clear that while medicine may be moving forward, many people are being left behind. To truly make a difference through medicine, it is imperative that all researchers adopt inclusive methods that respect and represent all communities to create healthier futures for all.
Kelley Northam is a Thermo Fisher Scientific staff writer.
