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Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.

3

Historical Roots of Medical Mistrust

Highlights from the Presentations

  • Labeling the study on syphilis as the “Tuskegee Study” mispresents the role of the Tuskegee Institute and reinforces how Black men were violated to study an epidemic that was affecting all Americans. A 1985 study documented 60,000 related age-adjusted excessive deaths experienced by the Black population, a number that increased to 83,000 excess deaths in a 2005 study (Warren).
  • The Middle Passage that forcibly brought Africans to the Caribbean and the Americas, chattel slavery, and the American eugenics movement are historical occurrences to consider in understanding how the Tuskegee syphilis study could have taken place. “These three constructs … form the atmosphere that allowed Black men in the Deep South—many, but not all, lower income and less educated—to be exploited, deceived, and abused” (Warren).
  • Regarding mistrust by many in the Black community, “It is not the science we distrust, it is the scientists. It is not the engineering we distrust; it is the engineers. It is not the medical system we distrust; it is the those who perform it” (Warren).
  • Motor vehicles and guns cause about the same number of deaths per year (about 33,000). In 2015, vehicle safety research
Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
  • was funded at $836 million, and gun violence at $5 million (Prothrow-Stith).
  • Using violence-prevention efforts as an example, trust can best be built when those who are directly involved in the issue are involved in developing solutions (Prothrow-Stith).
  • A number of factors contributed to the exclusion of Blacks from medical education. These include the 1910 Flexner Report, which standardized resources required for a medical school to exist and resulted in the closures of medical schools for Black students. The Regional Medical Agreements, created because public medical schools in 16 southern states did not want to desegregate, resulted in reduced opportunities for Black students in medical schools. Additionally, actions by the American Medical Association resulted in Blacks and women being barred from membership, negatively affecting the careers of Black physicians and the viability of hospitals serving Black patients (Bright).
  • Medical school was deemed a privilege open only to those who could afford to attend. Thus, Blacks were diverted into public health and sanitation instead (Bright).
  • The number of Black male medical school matriculants was 548 in 1978 and 515 in 2014. Through intentional efforts, the number increased to 839 in 2021–2022, but there are potentially many more who do not apply or matriculate (Bright).
  • “It is important to hold leadership accountable to make schools not just a diverse class but also create a climate and culture conducive to success. We don’t want to just admit students but graduate doctors for a lifetime” (Bright).

Discrepancies and inequities have always been in the health system, but they have accelerated in recent decades, said Louis Sullivan, M.D. (Sullivan Alliance), in introducing the first panel of the workshop, “From Tuskegee to Monkeypox.” This panel reflected on these historical inequities and their acceleration in recent decades. “Our task is to focus on where we are and find strategies to improve the health and health status of Americans, particularly African Americans and low-income individuals,” Dr. Sullivan said. He reminded participants that mistrust occurs not only in the health system

Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.

but also in other societal institutions, as covered in a recent issue of the journal Daedalus. He called attention to an article in the journal on the health system (Blendon and Benson, 2022). He pointed out the medical progress made during the 20th century, such as the elimination of smallpox globally, near elimination of polio, introduction of antibiotics, organ transplantation, and new technologies. Within that progress, he said, African Americans are disadvantaged, including in underrepresentation in the health professions, lack of health insurance that impedes access to care, discrimination, and unconscious bias. “When it comes to trust, we have seen declines in trust of physicians, from three-quarters to less than half implicitly trusting their doctors,” he said (see also Chapter 4). Conversely, “If there is trust and understanding, there is a greater chance that recommendations are followed and health outcomes are improved.” He introduced panelists Rueben Warren, D.D.S., Dr.P.H., M.P.H., M.Div. (National Center for Bioethics in Research and Health Care); Deborah Prothrow-Stith, M.D. (Charles R. Drew University of Medicine and Science [CDU]); and Cedric Bright, M.D. (East Carolina University).

REFRAMING THE HISTORY

Dr. Warren reflected on the panel title and commented that hearing “Tuskegee” often serves as a reminder of adverse health effects and environmental injustice. However, he said,

It seems that Tuskegee is used as a metaphor for something that is not good related to adverse health effects and environmental justice. I know Tuskegee very differently. I know Tuskegee as a place where Booker T. Washington in 1915 started Negro Health Week. I know Tuskegee as a place where George Washington Carver did many things to enhance science for people throughout the world. I know Tuskegee as the Tuskegee Airmen.

Dr. Warren also directed attention to the concept of the Black community. “When we say, ‘the Black community endured,’ what are we talking about?” he posed. First and most importantly, he said, community is more than geography, but instead individuals who share common places and thinking. He was born in San Antonio and grew up in Los Angeles. The Watts revolt of 1965 was mislabeled a riot by the press, he noted, and said he was not surprised when the popular press called the study that took place

Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.

in Lincoln County as “the Tuskegee Study.” It is a type of disinformation, he said, which he defined as “the intentional effort to mislead with false information.”

Dr. Warren said he wanted to shift his comments from the Black community to the Black population as a “quantifiable and measurable way to understand the Black community.” In 1985, a presidential study documented 60,000 age-adjusted excessive deaths experienced by the Black population (HHS, 1985). These were preventable and needless deaths, he stressed. In 2005, Satcher et al. repeated the study, and found it had risen to 83,000 excess deaths. Dr. Warren posited the number would be higher today.

An Erroneous and Consequential Name

Dr. Warren said he has spent considerable time focusing on what he stressed is erroneously called the “Tuskegee Syphilis Study.” The original name was the “Tuskegee Study of Untreated Syphilis in the Negro Male in Macon County, Alabama.” In 1972, when the Associated Press exposed the study, the name “Tuskegee Syphilis Study” was adopted. Vanessa Northington Gamble, the second director of the National Center for Bioethics in Research and Health Care, while serving on an ethics advisory committee at the Centers for Disease Control and Prevention, recommended a more descriptive name for the study. The title was replaced with the more accurate “U.S. Public Health Service Syphilis Study at Tuskegee.”

In an essay, Dr. Vickie Mays (2012) posited that the original name of the study highlighted three points that reveal its real intent: that scientists knew the name “Tuskegee” was associated with the Tuskegee Institute, which had a long history of operating in the best interests of the Black population and thus would engender trust to participate. Second, “untreated” means there was never any intent to treat the men for the disease. Third, “Negro male” meant that only Black men were included, even though syphilis was at epidemic levels among the entire population at the time, including white men and women. “Lastly, the so-called study spread across the country, and in fact beyond the United States,” Dr. Warren said. The federal government developed a surveillance system to track the men wherever they went to ensure they were not treated. He emphasized that the men were not told they had the disease, only that “they had bad blood, whatever that means.”

He stressed that despite what the name of the study connoted, the syphilis study was not sponsored by Tuskegee Institute. The association with

Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.

Tuskegee engendered trust, thus fooling the men. The context and framework that preceded the study are important to understand how it came about and its consequences today. It has influenced science, engineering, and medicine, he said.

Reasons for Mistrust

The Middle Passage that forcibly brought Africans to the Caribbean and the Americas, chattel slavery, and the American eugenics movement are further historic occurrences to consider in understanding how the syphilis study could have taken place, Dr. Warren said. The deaths associated with the Middle Passage itself (on land and at sea) are estimated to be 2 million people. In chattel slavery, enslaved persons had no freedom or rights. Its expansion based on race was unprecedented. Eugenics, the scientific and social movement that misuses genetics to support policy, was accepted in many academic communities in the United States. “These three constructs—the Middle Passage, chattel slavery, and eugenics—form the atmosphere that allowed Black men in the Deep South, many but not all lower income and less educated, to be exploited, deceived, and abused,” he said.

Subsequent situations provide reasons for Black people to hesitate and pause, but not to totally reject science, engineering, and medicine, Dr. Warren said. As examples, eugenics was promoted as a science. The U.S. Army Corps of Engineers knew a flood could overcome the levees they built in New Orleans and waters would flow into the Black neighborhoods, as occurred in Hurricane Katrina. “I suggest that it is not the science we distrust, it is the scientists. It is not the engineering we distrust; it is the engineers. It is not the medical system we distrust; it is those who perform it,” he asserted.

Dr. Warren reflected on lessons learned:

In my view, the most important is to think about the difference between trust and trustworthiness. A trustworthy person is acting when they keep their promises, act reliably, and do what they say they are going to do. We must do that if we expect people to trust us. Work to be trustworthy before you ask to be trusted.

He also called for a balance between information and persuasion. In health and healthcare domains, information is not enough. Be thoughtful

Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.

about information, misinformation, and disinformation. Disinformation is deadly, he said. Consider the source from which information comes. “Persuasion is never right or appropriate,” he said. “Encouragement and information, yes, but not persuasion.”

He concluded that he has learned from ethicists that they do not “answer questions, they question answers.” He said they have also taught him that it is okay to say, “I don’t know.”

RECOGNIZING VIOLENCE AS A PUBLIC HEALTH ISSUE

Dr. Prothrow-Stith began by noting that the CDU College of Medicine received its preliminary accreditation in October 2022 and is planning on a class of 60 to enter in July 2023. She expressed appreciation to the hundreds of people involved in creating, sustaining, and gaining accreditation for the medical school.

She focused on issues of funding in thinking about the reasons that trust is lacking. “One of the reasons we lack trust is the way research and other health programs are funded,” she posited. Annual deaths from motor vehicle crashes and gun violence are about the same—about 33,000 deaths from each cause. Yet, in 2015, Congress appropriated more than $830 million for vehicle safety research and $5 million for gun violence research. “The tax dollars that fund National Institutes of Health and public health activities come from all Americans, but the priorities reflect something different than equal distribution of concerns,” she said. These funding priorities do not necessarily reflect the priorities of the American public.

Media coverage also affects trust, Dr. Prothrow-Stith continued. Again, using violence as a lens, there are about twice as many suicides (21,386 in 2014) as homicides (11,108 in 2014, 14 of whom died in mass shootings). Media coverage does not depict this reality, and it results in stigmatization and fear. Local news coverage about violent crime leaves the impression of “inevitability” of this violence, with the purchase of a personal firearm seen as the only option.

She looked to history to show how violence has dictated the health and social structures that have created disparities for the Black community. Before the Civil War, institutions became the slave-catchers and arms of the slave industry, she said, to the point that in 1851, Blacks in Boston were warned against talking with watchmen and police officers to guard against being kidnapped. In violence prevention work, it is important to understand this history.

Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.

More recently, she said, cameras have helped in the understanding that policing and the criminal justice system have been an arm of the public health problem related to violence. Incarceration, or as it has been called, the new Jim Crow, is a form of re-enslavement. According to 2010 census data, African Americans make up 13.6 percent of the U.S. population, but Black men make up approximately 40 percent of prison inmates. Black men are nearly 6 times as likely to be incarcerated as white men, and 2.3 times more likely than Hispanic men. Among Black men in their thirties, 1 in 10 is in prison or jail on any given day. “Public health has been late to the game in calling incarceration as done in the United States a public health problem,” she said. “We really should consider the public health impact of this mass incarceration in the United States as part of the problem, and it certainly is part of the mistrust.”

With those examples, Dr. Prothrow-Stith said, it is important for those who are the most affected by the issues to become involved in the solutions. In the area of violence prevention, strategies improved when young Black and Brown men became involved, she said, pointing to programs in Boston and Minneapolis. “If someone is telling you information, sharing, and building a relationship, it is very helpful to have that person be ethnically, culturally, and gender-wise competent,” she said. “This is important if we are going to be the trust-builders. We have to diversify the workforce. We have to bring providers with authentic solutions to the table.”

She concluded by looking forward to CDU’s incoming class of 60 medical students as one way to diversify the workforce, moving the agenda of the Black community forward, and finding solutions.

THE IMPACT OF EARLY MEDICAL EDUCATION

Dr. Bright reviewed the history of medical education, concentrating on the Flexner Report, Regional Medical Agreements, and the American Medical Association (AMA). He began by discussing some of the effects of the Flexner Report, which was published in 1910.1 Many medical schools for Black students closed right before and after the report because of a lack of resources. Flexner standardized the resources required for a medical school to exist. A school had to have an association with an academic home

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1 For more background on the Flexner Report, see the proceedings from the Roundtable’s workshop on The Impacts of Racism and Bias on Black People in Science, Engineering, and Medicine (NASEM, 2020).

Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.

and hospital, which became the model for 4-year medical training with foundational and clinical phases. Among those that closed was the Leonard Medical School at Shaw University in Raleigh, North Carolina, which had graduated 339 Black doctors from the 1870s to the 1920s. Some white medical schools, including the school at the University of North Carolina (UNC), also closed, he noted, and there was a move away from for-profit medical schools. Medical school was deemed a privilege open only to those who could afford to attend. Blacks were diverted into public health and sanitation, to control what would “spill over to the white community.”

The Southern Regional Compact was created because public medical schools in 16 southern states did not want to desegregate. Instead, they paid for students of color to attend Howard University or Meharry Medical College rather than integrate their schools. In 1955, the case Frasier v. Board of Trustees of the University of North Carolina declared illegal the segregation of the UNC law school (a precedent for other professional schools).2

Related to the American Medical Association, Dr. Bright explained that Nathan Davis is hailed as the father of medicine as one of the founders and presidents of the AMA. Dr. Davis barred Blacks and women from being members, which filtered to how doctors could practice at the local level. The exclusion resulted in the formation of the National Medical Association (NMA), but it also affected the careers of Black physicians and the viability of hospitals serving Black patients. Without AMA membership, Black physicians could not get hospital privileges. Black hospitals that opened were reimbursed at lower rates than hospitals serving white patients. Vestiges of this continues today and bears paying attention, Dr. Bright said.

In 2008, AMA president Ron Davis issued a formal apology to Black physicians. “For me, it was a poignant moment of time,” Dr. Bright said. “It was acknowledgment of wrongdoing to a cohort or race of people who only wanted to do the best for their people and the world.” To have that acknowledged was a first step that showed that AMA actions toward Black doctors was real and deliberate, and not imagined by those excluded, Dr. Bright said.

In 2004, Dr. Bright reminded the group, Dr. Louis Sullivan and others issued a report calling for the “need for leadership, commitment, and accountability at the highest levels of institutions of learning and professional organizations” to address the dire shortage of minorities in health

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2 Leroy Benjamin Frasier, Jr., et al., v. Board of Trustees of the University of North Carolina et al., 134 F. Supp. 589 (1955), United States District Court M. D. North Carolina.

Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.

care (Sullivan Commission, 2004). The report also noted the connection with trust, stating, “These inadequacies not only detrimentally affect health outcomes, they also represent a social injustice that undermines the trust of minorities in our nation’s government and institutions of health and education.” Many of these issues were borne out in the COVID-19 pandemic, Dr. Bright said, adding, “The words of the past can predict the future hauntingly.”

In 2015, the Association of American Medical Colleges (AAMC) issued the report Altering the Course: Black Males in Medicine, which served as a clarion call about the need for more diversity among medical students. Between 1978 and 2014, the number of Black male medical students declined from 542 matriculants to 515, with no other group seeing such a steep decline. With intentional effort, the number increased to 683 in 2019 and 863 in 2020–2021. Black males in the most recent year were 10 percent of the matriculating class. The largest number come from Historically Black Colleges and Universities, but a significant number are in the pipeline at Predominantly White Institutions (PWIs). Dr. Bright said the numbers still do not represent the potential number of Black undergraduates who could apply to medical school. A collaboration of AAMC, NMA, and other partners is focusing on the counseling and resources for undergraduates to be successful at PWIs so that they go on to medical school, for example, figuring out a strategy to deal with a C in a course and not just giving up. Dr. Bright also noted that there are only 864 Black medical school faculty, or 3.7 percent of the total, compared with 29,587 white faculty.

Dr. Bright concluded that many elements are needed to change the narrative to increase the number of Black men in medicine. “It is important to hold leadership accountable to make schools not just a diverse class but also create a climate and culture conducive to success. We don’t want to just admit students but graduate doctors for a lifetime,” he said.

REFERENCES

AAMC (Association of American Medical Colleges). 2015. Altering the Course: Black Males in Medicine. https://store.aamc.org/downloadable/download/sample/sample_id/84/.

Blendon, R., and J. Benson. 2022. Trust in medicine, the health system, and public health. Daedalus, Fall. https://www.amacad.org/publication/trust-medicine-health-system-public-health.

Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.

Flexner, A. 1910. Medical Education in the United States and Canada Bulletin Number Four (The Flexner Report). Carnegie Foundation on the Advancement of Teaching. http://archive.carnegiefoundation.org/publications/medical-education-united-states-and-canada-bulletin-number-four-flexner-report.html.

HHS (U.S. Department of Health and Human Services). 1985. Report of the Secretary’s Task Force on Black & Minority Health (Heckler Report). http://resource.nlm.nih.gov/8602912

Mays, V. M. 2012. The legacy of the U.S. public health services study of untreated syphilis in African American men at Tuskegee on the Affordable Care Act and health care reform fifteen years after President Clinton’s apology. Ethics & Behavior 22(6): 411–418. https://doi.org/10.1080/10508422.2012.730808.

National Academies of Sciences, Engineering, and Medicine. 2020. The Impacts of Racism and Bias on Black People Pursuing Careers in Science, Engineering, and Medicine: Proceedings of a Workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/25849.

Satcher, D., G. E. Fryer, Jr., J. McCann, A. Troutman, S. H. Woolf, and G. Rust. 2005. What if we were equal? A comparison of the black-white mortality gap in 1960 and 2000. Health Affairs 24(2): 459–464. http://doi.org/10.1377/hlthaff.24.2.459.

Sullivan Commission. 2004. Missing Persons: Minorities in the Health Professions, a Report of the Sullivan Commission on Diversity in the Healthcare Workforce. https://campaignforaction.org/wp-content/uploads/2016/04/SullivanReport-Diversity-in-Healthcare-Workforce1.pdf.

Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
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Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
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Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
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Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
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Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
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Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
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Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
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Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
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Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
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Suggested Citation: "3 Historical Roots of Medical Mistrust." National Academies of Sciences, Engineering, and Medicine. 2025. Leveraging Trust to Advance Science, Engineering, and Medicine in the Black Community: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/27649.
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Next Chapter: 4 Building Trust in SEM Institutions
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