This blog summarizes key points discussed during Myriad Neuroscience’s February 25, 2021 Webinar: Inherited Mistrust: What’s Behind Black Skepticism of Mental Healthcare?

A panel of experts in mental healthcare diversity and inclusion discussed what’s happened in our nation’s past to cause the deep-rooted mistrust of the mental healthcare system and clinical research in the Black community – and what can be done to build back that trust.

Dr. Malaika Berkeley is the co-founder of Global Health Psychiatry in Atlanta and a co-author of Mind Matters: A Resource Guide to Psychiatry for Black Communities and Bree’s Journey to Joy: A Story About Childhood Grief And Depression.

Dr. Balin A. Durr is a child, adolescent & adult psychiatrist at the Will County Community Health Center in Joliet, Ill.

Dr. Iverson Bell, Jr., is an associate professor and the residency training director of psychiatry at the University of Tennessee Health Science Center.

Dr. Lonna Mollison has an extensive history as a researcher with a particular passion for bringing genetic screening into the medicine mainstream so that all people benefit.

The History of Black American Mistrust of Mental Healthcare and Clinical Research

Mistrust damages the clinician-patient relationship, discourages patients from getting the care they need, and prevents clinicians from fully understanding context about a patient’s experience that could lead to more beneficial treatment.

Where does this mistrust come from, and why is it so pronounced in the Black community?

The roots of mistrust took hold many decades ago. Jay Phifer, molecular sales consultant with Myriad Neuroscience and moderator of the panel, noted that the Tuskegee Study of Untreated Syphilis in the Negro Male has been called “the most enduring wound in American health science.”

A 40-year experiment run by Public Health Service officials in Tuskegee, Ala. followed 600 rural black men with syphilis over the course of their lives. The study, which began in 1932, didn’t tell patients of their diagnosis and didn’t treat them. The experiment went on until 1972. By then, many of the men had died from complications of syphilis, and several of their wives and children contracted the disease.

Tuskegee continues to be an important touchpoint, but it is hardly the only example of why the Black community does not trust the medical community.

Harriet Washington, in her book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present says that “mistrust of medical research and the health care infrastructure is extensive and persistent among African Americans,” stemming from “more than four centuries of a biomedical enterprise designed to exploit African Americans.”

That mistrust persists even in the families of African Americans who have chosen careers in mental healthcare and research.

“My family members were so hesitant,” recalled Dr. Mollison when she told her family she was working in genomic medicine research. “I realized in that moment that my own passion and excitement and enthusiasm for precision medicine somewhat blinded me, naively, to the fact that reasons for the stress would extend to this emerging field.”

Dr. Mollison elaborated that the mistrust predates the Tuskegee experiments by hundreds of years. “It’s linked to the extensive and unfortunate racist history of this country,” she said.

Experiments on slaves, Jim Crow-era restrictions on care, and the eugenics movement each suppressed and exploited Black individuals, leading to doubts about the intentions of researchers and medical professionals.

Mistrust may be even more pronounced in psychiatry compared to other medical practices. “Generally, the people around me were accepting of the field of medicine – not so sure about psychiatry,” said Dr. Bell about his own experience.

Dr. Berkeley added that she did not notice signs of mistrust against the medical community growing up. Because she grew up in the Caribbean, Dr. Berkeley shared that the mistrust may not have been present because “most of the providers looked like us.”

What is Contributing to Mistrust in the Mental Health Practice Today?

The causes of mistrust are not just a history lesson. The panelists touched on factors present in today’s cultural environment that can lead to mistrust.

Stigma Against Mental Illness and the Black Community

“If you don’t know how to fix your car, you don’t usually just abandon it on the road and never go back to get it. You find a mechanic to fix it,” elaborated Dr. Durr. “So, in the same way with mental illness, it’s a set of tools and it’s a skillset and it’s training. So, if you don’t know how to do that yourself, then get some help from somebody who does have that ability to help you heal yourself.”

Dr. Berkeley added that while stigma does not exist just in the African American community, it is greater in the Black community.

A potential consequence of the stigma is fewer Black students entering psychiatry, meaning fewer practitioners treating patients who look like them.

Dr. Bell says there’s a problem “getting kids interested in medicine and getting people in medicine interested in going into psychiatry; There’s a stigma against psychiatry.” Dr. Bell indicates in his area he can count the number of Black psychiatrists on one hand.

“Yes, we’ve made some progress with the population in psychiatry, yes we’ve made some progress in racial relations, but people don’t recognize that they have issues, and people don’t like to change,” said Dr. Bell.

Thinking about Mental Health as Brain Health

Dr. Berkeley refers to mental health in her practice as “brain health” which helps patients grasp why care is needed. Like health conditions affecting other organs, the brain is an organ and more tangible than the mind.

“Behavior and thought is changing brain structure, and brain structure affecting thought and behavior,” said Dr. Durr. “If you don’t give your brain the things that it needs… to build healthy structures, it’s not going to work properly.”

Using Economics to Divide and Create Barriers

Economics can also play a role in the stigma associated with mental health.

“Color is important…[but] the most important color is green,” Dr. Durr elaborated. “We’re squabbling with each other over resources and it becomes ‘what do I need to do’ and ‘who do I have to do it to’ in order to protect me and mine… It’s dehumanizing us as human beings and turning us into commodities in order to build capital, in order to develop or earn profit and power.”

Little Time to Develop Meaningful Clinician-Patient Relationships

Elaborating on the importance of relationships in mental health care, Dr. Durr said, “medical providers attempt to provide care because we’re trained to fix things, and we attempt to provide care too quickly, meaning before we established a relationship, before we establish a rapport.”

“Sometimes the patients don’t agree with us about the diagnosis, [so] they don’t agree about the treatment,” she continued. “I think people have legitimate concerns and so I think the thing to do is to honor their concerns and to work to form relationship and rapport, and that way you can develop trust, and in that way I am able to actually help.”

Is it Possible to Increase Representation in All Areas of Mental Healthcare?

When asked about what’s being done to fill a pipeline of young students interested in psychiatry, Dr. Bell said, “the idea is to have outreach and exposure so that we don’t seem as dangerous or strange as some might make us out to be.”

Cultural humility is important according to Dr. Bell. In other words, practitioners should be willing to ask questions about things they don’t understand and recognize they don’t know everything about another culture.

To help recruit more minority patients, Dr. Mollison recommends bringing the studies to the communities where those patients live, which helps to remove barriers involved with access and helps the researcher build relationships within the community. For example, including bus passes for participants who rely on public transportation could improve access. Revisiting those communities to share study results in unique ways can help regain trust according to Dr. Mollison, versus only “showing up” when the researcher needs participants.

Further, representation matters. “People want to see leaders of research who reflect their community,” and while Dr. Mollison agrees with Dr. Bell that training more Black mental health professionals can make a difference, she said those individuals also need to be hired into positions at a greater rate to make an impact.

Dr. Mollison advises researchers to include more Black individuals in their clinical trials and encourages Black individuals to participate in those trials, so the application of those results is more equitable.

Dr. Berkeley stresses continued cultural education for clinicians and speaking up if one notices a pattern of mistreatment in their practice. “Sometimes we are not aware that we are doing things or that the practice is operating in a way that may be not best suited for our patients,” she said. Further, if there are disparities in care, it may help to educate clinicians and staff on cultural competency.

Watch the entire webinar on our website at genesight.com/genesight-cares to learn more about the factors that contribute to mistrust of medical practice within the Black community.