Since the COVID-19 pandemic shook the globe four years ago, headlines and public conversations have focused on the public’s trust—and the lack of it—in science and medicine.
But trust, mistrust, and distrust—we’ll get to the meaning behind those terms—have been changing shape in the U.S. for decades. Surveys show declines in trust in health care, especially among populations that historically have been harmed by medical research and scientific abuses whose legacies persist today.
As a licensed clinical psychologist, behavioral scientist, and health disparities researcher, I have witnessed these effects up close on a professional level:
A middle-aged Black American patient with late-stage head and neck cancer, whom I treated for anxiety and depression some years ago, delayed seeking medical care because of prior negative experiences with doctors (such as perceived disrespect and the hesitation of clinicians to touch him during physical exams); a preference for natural remedies (such as herbs and vitamins); costly medical bills; and a history of repeated clinic visits for other symptoms with no diagnoses but multiple prescriptions. By the time he sought help, the lump on his neck had grown to the size of a large apple, and the cancer had spread to other organs.
Still another example was a woman who is a member of my own family. A mother of six, she had such negative experiences in medical settings over the years and during previous pregnancies—feeling ignored and minimized, not given pain medication when needed, and discriminated against because of her race by White doctors—that she skipped all prenatal care and went to the ER only when she went into labor with her last three children, requesting cesarean sections based on her past deliveries.
And I’ve been affected by these concerns on a personal level through my own experiences in medical settings, and simply by the fact that I’m a Black American woman in a field that has historically marginalized people like me. I was moved to partner with a community advisory board I worked with on research called the Forward Movement Project, which asked patients and residents from medically underserved populations to weigh in on health care concerns. The findings from this study and other research and surveys make clear that today many Americans deliberately avoid seeking out health care or participating in medical research until they have no other choice, reflecting personal and community experiences with these institutions that have led to widespread and deeply rooted medical distrust.
Trust, mistrust, and distrust: defining the terms
The psychological concepts of trust, mistrust, and distrust are interconnected, yet distinct
and nuanced.
Trust refers to a belief in the reliability or ability of an individual or institution. In health care and science, it’s essential for cooperation and compliance with health interventions, treatment plans, and science-based clinical guidelines as well as clinical trial participation. Studies show that patients who trust their clinicians are more likely to follow medical advice, seek help when needed, and maintain ongoing care.
Mistrust involves a vague unease or a gut feeling of skepticism, often based on past experiences, but has not yet become full-stop rejection. The sources of the doubt may not always be clear. In health care, mistrust may lead to hesitating to accept information, expressing concern about the motives for a treatment plan, or seeking second opinions specifically for validation. The scientific literature often refers to mistrust for science and medicine especially among racial and/or minority populations, but distrust is the more accurate term.
Distrust is more severe than mistrust, and reflects a firm belief that doctors, scientists, and/or health care institutions are untrustworthy, often rooted in personal or community experiences of harm or betrayal. It can result in underutilization of health care services, belief in conspiracy theories, or outright rejection of medical advice.
And, unfortunately, history is replete with cases that fuel distrust for many people.
Historical sources of medical distrust
The U.S. Public Health Service Untreated Syphilis Study at Tuskegee is one of the most infamous examples of institutional betrayal, fueling deep distrust in science and health care, particularly among Black Americans.
From 1932 to 1972, Black men with syphilis were misled into believing they were receiving free health care but were deliberately left untreated, even after penicillin was found to be a cure. This unethical study symbolizes racial exploitation in medicine. Although its ongoing impact on distrust is debated, Tuskegee has left a legacy of institutional distrust for many Black Americans.
And there are other egregious examples of human exploitation and intentional harm in science and health care that targeted specific communities.
The eugenics movement in the early 20th century in the U.S. aimed to eliminate what its proponents considered “undesirable” traits within the population. This movement sought to “improve” the human gene pool by promoting traits associated with White individuals and those without visible disabilities who were considered the most “fit.” Consequently, Black women and Latinas, including many Puerto Rican women, endured decades of coerced sterilization that persisted into the 1970s.
Even more recently, in 1989, members of the Havasupai Tribe, a small, economically disadvantaged Tribe of 650 people, asked an Arizona State University professor for help in understanding and addressing the increase in diabetes in their community. They supplied genetic samples, only to later learn that those samples were also used for purposes they had not consented to—including research on inbreeding and alcoholism. They brought a lawsuit against the university that was settled in 2010 with the samples returned, a monetary settlement, and help obtaining funding for a health clinic.
Recent sources of distrust: COVID-19 and beyond
The COVID-19 pandemic brought distrust in science and health care to the forefront, particularly among Black or African American, Latino or Hispanic, American Indian or Alaska Native, and Native Hawaiian or Pacific Islander populations, who experienced disproportionately high rates of infection, hospitalization, and death—especially in 2020, 2021, and 2022.
Despite the rapid development of COVID-19 vaccines thanks to years of mRNA research, vaccine hesitancy and low uptake were widespread.
Although political discourse, misinformation, and disinformation played roles, vaccine hesitancy among populations experiencing health disparities stemmed from historical roots as well as ongoing experiences of discrimination and neglect within the health care system.
The hesitancy, particularly in communities hardest hit by COVID-19, didn’t surprise me. Many patients I encountered expressed concerns like, “We don’t want the vaccines at all” or “We don’t want the vaccines first.” People feared they would receive a “bad batch,” questioning why underserved communities were suddenly prioritized for the first time in modern U.S. history.
Ironically, the prioritization was due to public health leaders’ aim to promote racial and ethnic equity in vaccine access. But the long-standing and justified distrust left many skeptical—showing just how challenging building trust in many communities will be. This distrust extends beyond vaccines, affecting areas such as cancer treatment, maternal health, and mental health services, where access and outcome disparities persist.
The conversation around distrust in science and medicine tends to focus on racial and ethnic minority populations, though a Gallup Poll indicated that only 36% of U.S. adults overall say they have a great deal of confidence in the medical system, compared with 80% in 1975.
Moreover, other populations experiencing health disparities—including sexual and gender minority groups, people with low socioeconomic status, people living in underserved rural areas, and people with disabilities—also report trust-related concerns for clinicians or the health care system because of the way they are treated.
These concerns are ripe for repair. But building trust will require hard work and showing trustworthiness and genuine engagement with the people who have the least confidence.
The Forward Movement Project
My own research on distrust in science and health care, the Forward Movement Project, offered an approach for examining these significant issues. We created a community-academic partnership to understand some aspects of the multilayered factors related to trust or distrust. Our community advisory board members were involved in every step of the research process—from identifying priorities to developing an intervention—giving them a sense of ownership and agency that are critical to rebuilding trust. We first went on a “listening tour,” hosting town hall-style meetings with members of underserved communities.
The research participants spoke candidly about their personal experiences, as well as those of their family and friends, within medical settings, and many were related to their current medical distrust. “We don’t trust the system, because it can’t be trusted. Health care should come first, but it’s become a business,” one person told us. Another said, “Trust was broken long ago in the African American community when it comes to medical research. People should be informed before they agree to participate, but the health care system hasn’t done enough to ease our concerns.” We shared the findings with hospital leadership, clinicians, other researchers, and the very people we listened to.
Based on comments like these, the challenges for repairing confidence in the medical system loomed large. A key finding from the Forward Movement Project was the importance of reciprocal trust-building between communities and institutions. Participants stressed that trust must be earned through transparency, accountability, and collaboration, with institutions showing a willingness to listen, learn, and adapt their practices based on community input.
So, about a year later, we returned to the same neighborhoods for the second phase of the research, bringing clinicians with us so that they could talk directly with community members and answer questions raised about the health care system. This was what we called a “user-generated” intervention, which consisted of participant-driven dialogues with oncology clinicians and support professionals. This was a rare opportunity for conversations between community members and health care professionals and researchers, allowing participants to discuss their questions about care, and to initiate important discussions. Findings from this second phase of the project were positive and indicated that this activity helped people learn new things about science and medicine and would help them during future medical encounters, and over half reported more willingness to join a clinical trial than before the intervention. This kind of open communication is a crucial first step toward building trust.
The Forward Movement Project also highlighted the importance of representation in reducing distrust. Community participants noted that racial or ethnic matching with clinicians improves culturally competent communication and empathetic care. Other research supports increasing the number of scientists and health care professionals from underrepresented backgrounds to create a workforce that better reflects the communities it serves.
The road toward trust
Trust is a fragile, underappreciated psychological construct that must be earned and is difficult to repair once broken. In that way, institutional distrust is not unlike repeated betrayals in personal relationships, but on a much larger and intergenerational scale.
It’s up to those with power and authority to take concrete actions for improvement so biomedical institutions and health care systems hold the primary responsibility for addressing distrust. Here are some ways they could start:
Publicly acknowledge the historical wrongdoings that have contributed to distrust, such as the Tuskegee syphilis study and forced sterilizations. This includes issuing apologies, acknowledging ongoing harm, and outlining the tangible steps to ensure that these violations never happen again.
Recruit and retain well-qualified individuals from underrepresented backgrounds at all levels—from students to leadership positions. Reflecting the diversity of the populations served is important, as is ensuring that these persons are committed to the intentional and long-term efforts needed to make progress on building trust.
Implement continual and comprehensive training on factors known to influence trust and distrust, such as cultural competency, bias, and practices and policies that foster and maintain inequities.
Invest in long-term partnerships with communities, not just when there is a need for research participants or representatives to serve on patient advocacy boards without decision-making authority. The exchange of knowledge is critical, and community members can offer informed views on health care policy, research agendas, and institutional priorities.
Move beyond traditional metrics of success such as patient satisfaction surveys, and instead work with communities to define what successful relationships and outcomes look like, which might include measures of trust, community empowerment, and perceived respect. This also involves engaging in health education, supporting local health initiatives, and contributing to overall community well-being.
Demonstrate a genuine desire to build and maintain trusting relationships. This will require efforts to strengthen oversight and accountability, such as independent panels consisting of scientists, clinicians, and community voices; community-identified and well-resourced public health initiatives; regular equity-focused audits of policies, treatment, and health outcomes, research enrollment and patient demographics; and corrective actions when disparities are identified.
Reducing distrust that has built up over a long time is far from simple. However, science and health care institutions can choose to take proactive, transparent, and sustained steps toward rebuilding trust. Equally important, they should raise awareness at local, state, and national levels about their efforts to prioritize the best interests of all communities for a more equitable future.
Monica Webb Hooper is a clinical psychologist and deputy director of the National Institute on Minority Health and Health Disparities at the National Institutes of Health.
This post was originally published on here
