When Will Science Be in the Service of All?

Currently, the development of Covid-19 vaccines has received a significant amount of media attention. The recently completed Phase 3 efficacy trial for the NIH-Moderna Covid-19 vaccine showed promising results, and the first doses of the Pfizer-BioNTech vaccine will be distributed to healthcare workers and “other vulnerable groups” in mid-December. However, despite the excitement of some who believe “things will return to normal,” there are others that differ in opinion. Third Way, a policy think tank, conducted an online poll of November 2020 voters on whether they would be willing to get the Covid-19 vaccine. In contrast to the widespread support for vaccines against measles and other diseases, the safety and effectiveness of newer vaccines, such as the Covid-19 vaccine, are subject to more skepticism. Even though this uncertainty exists across all communities, racial disparities in levels of distrust emerge. Third Way reported that “only 50 percent of African Americans said that they would be willing to receive the Covid-19 vaccine, compared to 76 percent of white Americans and 74 percent of Latino Americans.” How can we explain this disparity in opinion, and how is the issue related to the history of US medical research? What are the implications of these disparities for the health of Black Americans today?

When applying for funding, scientists today often appeal to how their research will either benefit people or help advance the understanding of their field. In the hopes of allocating taxpayer money to fund the most promising studies, the National Institutes of Health (NIH) established a panel of peer-reviewers to score an application’s overall impact. Other considerations include the “inclusion of women, minorities and children in research” and the protections for human subjects. For example, researchers are required to file their grants with the Office for Human Research Protections (OHRP). Additionally, every major research institution has established their own independent ethics committee to review proposals involving human research subjects. With these policy protections at multiple levels of biomedical research, it seems that science should be inclusive and in the service of all. However, previous biomedical research in the US has been fraught with racism, leading to the current mistrust in science by minority communities. By exploring the power imbalances from the past, despite the policies put in place, we may be able to shed light on the recurrent mistrust towards science within disadvantaged communities. This mistrust can further illuminate how systemic racism has negatively impacted the health of Black Americans.

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Beginning in 1932, hundreds of Black men in Macon County, Alabama, were recruited by the US Public Health Service to participate in a medical study on syphilis. By the 1940s, people were contracting more benign cases than those in the 1490s, but there was still no known treatment for the disease. Claiming to search for a better syphilis treatment, researchers from the federal agency and Tuskegee Institute created the “Tuskegee Study of Untreated Syphilis in the Negro Male” to understand the symptom profile and study untreated cases of syphilis. Despite being promised treatment for the disease, these men, who were largely sharecroppers, received only a placebo. 

It was not until 1972 when the Associated Press (AP) published a story documenting how the men in the study were left untreated for 40 years when the immorality of the study came to light. In their report, the AP detailed how in the early 1940s, penicillin was considered to be a more effective and less dangerous treatment for syphilis than the previously available metal treatments, such as mercury, arsenic and bismuth injections. When penicillin became widely available in the late 1940s, the decision to not treat the study participants with penicillin raised “a serious moral problem” according to Dr. J.D. Millar, a public health official in the Center for Disease Control (CDC) in Atlanta responsible for what was left of the Tuskegee Study in 1972. When asked who was primarily responsible for this decision, Millar doubted that “it was a one-man decision.” He also believed that the program would not be approved in contemporary times, since “attitudes … on treatment and experimentation” have changed since the early 30s.   

According to Dr. Millar, fifteen reports were published in medical literature from the results of the Tuskegee Study. However, because penicillin was well-known to be the best treatment for syphilis, people called into question whether the findings from the Tuskegee Study actually helped to advance the treatment for Black men with syphilis. The first concerns about the study were raised by Peter Buxtun and others in 1968, but were largely dismissed. One year later, the CDC reaffirmed the need for the study and even gained the support of local medical societies, including the American Medical Association and National Medical Association. Even Dr. Millar seemed to defend the study at the time of the AP report, stressing that “patients were not denied drugs,” instead asserting that doctors did not offer penicillin as an option.

Public outcry over the Tuskegee Study in 1972 forever changed research experimentation at the policy level, but mistrust has continued to linger, leading to disparities in the health of African Americans. The National Research Act of 1974 created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, a group that outlined “basic ethical principles” and “guidelines that address ethical issues” with human research subjects. In his 1997 official apology to the Tuskegee Study participants, President Clinton acknowledged that it would take more than a massive overhaul at the federal level; the medical community and federal government needed to regain the trust of the Black Americans on a community level as well. In a 2019 study, researchers found that the revelations of the Tuskegee Study in 1972 correlated with “increases in the medical mistrust and mortality” and “decreases in both outpatient and inpatient physician interactions for older [B]lack men.” The study further extended this finding to suggest that life expectancy for Black men at age 45 decreased by “1.5 years in response to the disclosure.”

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In 1951, Henrietta Lacks received treatment for late stage cervical cancer at Johns Hopkins Hospital. She was a Black tobacco farmer in the time of segregation, and Johns Hopkins Hospital was one of few leading hospitals to provide the same quality treatment for both Black and white patients. The best available treatment then for the tumor was radium radiation, and it was common practice for doctors to obtain extra samples of tissue for scientific research. There were no regulations regarding the consent of obtaining cells or tissues from patients; the use of cells in research; and no state or federal laws prohibiting the sharing of medical record information in connection with research. In line with common protocol, Dr. George Gey–a cancer researcher–obtained extra tissue from Lack’s cervix for the use in medical experiments. 

Lacks died at the age of thirty-one, but her cancerous cells continued to grow. While other cell samples quickly died, Dr. Gey noticed that Lacks’ cells continued to grow at a remarkably rapid pace. Lack’s cells became known as the first immortal human cell line, and scientists have used the HeLa (derived from the first two letters of her first and last names) cell line to make important medical advancements in cancer, the polio vaccine, HIV/AIDS, and even Covid-19 research. Johns Hopkins University states that it did not profit from the HeLa cell line and has “offered HeLa cells freely and widely for scientific research,” having no intellectual property rights. However, for the biotechnology companies and other researchers that did profit from the HeLa cell lines, they failed to compensate the Lacks family due to the absence of intellectual property rights and the free distribution of the cell line by John Hopkins. All of these developments remained largely unknown to the children that survived Henrietta Lacks. In 1974, when Deborah Lacks approached a genetics researcher to obtain more information on the cell line derived from her mother’s tissue, the scientist handed her his medical textbook, complete with an autograph, and told her that everything she needed to know lay within the textbook. 

Reparations began thirty years after that incident, which was detailed in journalist Rebecca Skloot’s 2010 book, The Immortal Life of Henrietta Lacks. In 2013, the director of the National Institutes of Health (NIH), Francis Collins sat down with the Lacks family to provide information previously unavailable to them. Collins first answered questions about the HeLa cell line and proceeded to ask for their opinions on whether the genome data of the HeLa cell lines should be released. Present at later negotiations were the Lacks family, Collins and his chief advisor, two mediators from a university set to publish a paper using the HeLa genome data, and Skloot. At the beginning, Collins emphasized the importance of how a genetic mutation led to the “immorality” of Henrietta Lacks’ cells. After the exchange of information, both parties negotiated how to best protect the privacy of Lack’s genome data. 

While Collins maintained that he did not pressure the family to agree to the release of the HeLa genome data, he did tell the Lacks family that it would be difficult to ban the use of the Lacks’ genome data. There were around “400 genomes’ worth of HeLa data already publicly available,” so thousands of scientists could “easily and cheaply” sequence the cell line themselves. Ultimately, the agreement reached led to the creation of a committee, which included the family members, to manage requests from researchers who wanted to use the Lacks family genome data. Federal agencies also redrafted rules that would give more power to subjects on how personal information and tissues were to be used in research.

The case of Henrietta Lacks demonstrates how unconscious racism has been embedded into the medical research community, leading to increased mistrust by Black Americans. While Johns Hopkins Hospital provided the same quality treatment for patients, there were disparities in the quality of care provided by white physicians. The Black population that received treatment from the hospital was mostly poor and uneducated, and doctors saw them not as people, but rather as treatment subjects. Implications of this lack of understanding between physicians and Black patients and their families are still present today. When asked by Pew researchers if “misconduct by medical doctors is a very/moderately big problem,” over 70% of Black Americans agreed with the statement, as compared to 43% of white Americans. 

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Despite efforts and policy changes to right the wrongs from the Tuskegee Syphilis Study and the handling of Henrietta Lacks’ cell lines, mistrust towards the medical community remains in the Black community. Scientists may prefer to distance themselves from social issues, but these social issues cannot be solved simply from the policy level. In addition to more effective bioethics legislation, medical researchers must work to reduce the social disparities engendered by science’s history of racism. As we can see today, this mistrust between the medical community and the Black community leads to disparities in health care. In one 2015 qualitative study, mistrust in “academic and research institutions and academics” was identified to be the greatest attitudinal barriers to participation in research. One common concern among Black Americans was that research could harm the Black community. Some Black participants worried that DNA samples collected by researchers would be used to criminalize innocent people. Others worried that the research data could be used to “reinforce negative stereotypes.” 

 Black Americans also reported that the lack of diversity among physicians was a source of mistrust, and this may lead to different treatment for Black patients compared to white patients. Although Black Americans make up 12.7% of the population, only 5% of physicians are Black. In a recent article in the New England Journal of Medicine, Dr. Theresa Williamson writes that she was asked to help establish “care goals” with the family of a young Black man who had suffered a gunshot wound to the head. As she checked the man’s vital signs, Dr. Williamson listened with the family to the rap music being played at the same time. Why was it that she–as opposed to her white counterparts–could establish immediate trust with the family? Being biracial, Dr. Williamson recalled the numerous experiences she had growing up that contributed to her empathy working as a physician: her ability to see the patients as people, attuned especially to the experience of Black Americans, informed her goals of “deliver[ing] excellence in care” and working with Black families to provide the “quality of life they seek for their loved ones.”  

To her fellow clinicians, Dr. Williamson called for the recognition of “Black Americans’ history of resilience and depth of culture, faith, and community” in hopes of better patient care. Because Black Americans are more likely than any other group to develop more severe cases of Covid-19, current physicians, researchers, academics, community members, and social workers must work collectively and persistently to rebuild a trust with the Black community, a trust that remains just as tenuous as the fight against the Covid-19 virus. When Covid-19 vaccines become widely available, the conversation must continue to establish the trust of the Black community.

There has never been a biological underpinning to race, but race as a social construct continues to have serious implications on the quality of life for Black Americans. Disparities in access to equitable healthcare, the current mistrust, the lack of diversity in the medical community, and other structural determinants are barriers to better treatment. It is imperative now, during the time of Covid-19 and in a renewed reckoning of systemic racism, for medical researchers to rebuild an equitable healthcare system–for all.  

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