By Yvonne Sam
Social and Political Commentator
Currently, in modern-day America there exists, within the Black community, an increasing trepidation and wariness with any type of health care provider — and especially when they are taking something from the Black population.
Notably the Tuskegee experiment and other reported abuses against African-Americans have contributed to Black people steering clear of medical research projects. time.com/3208886/whistleblower-claims-cdc-covered-up-data-showing-vaccine-autism-link.
Now in an attempt to overcome this deepening incertitude, the University of Miami, Miller School of Medicine, is, if only to reach its goal of gathering a diverse group of participants in South Florida, engaged in a massive medical research study called “All of Us”.
The latter-mentioned is the service mark of the U.S. Department of Health and Human Services, and is a more vendible and trafficable name for what is known in the medical industry as precision medicine initiative. med.miami.edu/news/miller-school-and-collaborators-in-nih-all-of-us-research-program-awarded-4.
The program has aspirations to amass data by the year 2022, from more than one million participants within the United States, in order to expedite research that may facilitate more individualized treatments and prevention strategies in the future.
The study project was initially funded with $215 million in 2015 during the Obama Administration, and the lead principal investigator for All of Us in Miami, Florida and Georgia, Dr. Stephan Zuchner, is one of the health-care experts seeking to conquer the existing mistrust in the Black community.
According to Dr. Zuchner, there is a specific interest to enroll people from ethnicities that are typically under-represented. In addition, he has clearly stated that the project will have a better chance of attracting Black participants in Georgia, because of their partnership with Morehouse, a historically Black medical school.
A primary selling point for likely participation lies in the fact that not only is the study observational, does not need drug trials or medical procedures, but furthermore, insurance companies are denied access to the mountains of collected data. allofus.nih.gov/sites/default/files/appendix_primary_consent_form-stamped.pdf.
The distrust for research and even treatment, experienced by African Americans, is not without merit. The Tuskegee Study of Untreated Syphilis in the Negro male, conducted between 1932 and 1972, is perhaps the most opprobrious medical experiment in American history.
Conducted, in collaboration with Tuskegee University, a historically black college in Alabama, the study was intended to look at the natural development of untreated syphilis in rural African-American men, and also determine proper treatment dosage and the best time to receive injections of treatments.
Of the men, 431 had previously contracted syphilis before the study began, and 169 did not have the disease. The men were told that the study would be of six months duration, but it actually lasted forty years.
After funding for treatment was lost, the study, nevertheless, continued without informing the men that they would never be treated. The experiment ended only because a journalist unmasked it, thereby fuelling a firestorm of public outrage over its racism and cruelty. Sadly, by then as many as 100 of the men had already died of syphilis. www.worldcat.org/title/examining-tuskegee-the-infamous-syphilis-study-and-its-legacy/oclc/496114416
Blacks have been forced to undergo painful, risky experimental surgery, dosed with radiation and set apart for experiments, aimed at finding brain abnormalities linked to violence. They have been falsely assumed to feel pain less than whites and to require higher X-ray doses for a readable film.
Another notable offender of medical injustice was James Marion Sims, a 19th century surgeon, esteemed as a devoted benefactor of women for designing ways of repairing severe vaginal injuries (vesico-vaginal fistula) that can occur in childbirth.
Sims perfected his expertise by carrying out scores of painful operations on the genitals of black slaves. Early attempts were so often unsuccessful that one young woman was operated on 30 times, and had to be held down during the excruciating procedures.
Despite the availability of ether, Sims refused to use it, insisting it was unnecessary. However, when he had refined the procedure enough to make it available to white women, he always offered them ether. www.history.com/news/the-father-of-modern-gynecology-performed-shocking-experiments-on-slaves.
Even in the 20th century shameful acts continued. Most of the feigned research, performed on Blacks, had the adornment of science, but was vacuous, poorly structured and based on deceptive theories.
In the book, Medical Apartheid, the author, Harriet Washington, a journalist and research scholar writes, “rendering black women infertile without their knowledge, during other surgery, was so common that the procedure was called a ‘Mississippi appendectomy.” The same was true in the North, as recently as the 1970’s, when unnecessary hysterectomies were often done on poor black and Puerto Rican women to give doctors in training a chance to practice their skills. mississippiappendectomy.wordpress.com/2007/11/19/black-women-in-the-1960s-and-1970s/.
From 1951 to 1974 several government agencies and private companies tested pharmaceuticals on inmates at Holmesburg Prison, the largest county prison in Philadelphia. The prison was looked upon as a human laboratory, an “idle collection of humanity that seemed ideal for dermatologic study”.
Dr. Albert Kligman, a famous dermatologist, recalled entering the Holmesburg prison for the first time as, “All I saw before me were acres of skin. It was like a farmer seeing a fertile field for the first time”.
The skin of the inmates became the playground of Kligman, who saw the opportunity to perform lucrative experiments on thousands of captive bodies. He was commissioned by 33 major pharmaceutical and cosmetic companies, such as Dow, Merck, Helena Rubenstein and Johnson & Johnson. countercurrents.org/2016/07/09/acres-of-skin-human-experiments-at-holmesburg-prison/
More recently, the U. S. Center for Disease Control and Prevention (CDC) was found to be concealing trial results of experimental measles vaccines, which showed an increased chance of young Black boys developing autism.
Dr. William Thompson, a Center for Disease Control researcher, blew the whistle on his employers and colleagues about a report, issued in 2004, on the research results. In August 2014, Thompson issued a statement saying, “the omitted data suggested that African American males, who received the MMR (measles, mumps, rubella) vaccine before age 36 months, were at increased risk for autism”.
History details, as outlined in the book Medical Apartheid, serve as a stark reminder that those in power have always been capable of profiting from those they consider as “other”, and of discovering ways of justifying the most heinous abuse. The victims are affirmed violent, unsound, depraved or a drain on the community. The medical tinkering is for their own good, and the greater good of society.
While Blacks may be wary of, or prefer not to participate in, the current All of Us program, geared to making medicine more precise, personal and hopefully much safer, there are certain aspects that cannot, and must not, be overlooked, or at worst, lightly disregarded. While the most reprehensible medical abuses in America may be a thing of the past, history has a way of repeating itself.
Hopefully such atrocities have come to an end, with a clear accompanying message being sent to drug companies – Blacks, the world over, have paid their due, so which nation will become your next exploitative venue? One cannot attain fruition in the absence of a solution.
Yvonne Sam, a retired Head Nurse and Secondary School Teacher, is Vice-president of the Guyana Cultural Association of Montreal. A regular columnist for over two decades with the Montreal Community Contact, her insightful and incursive articles on topics ranging from politics, human rights and immigration, to education and parenting have also appeared in the Huffington Post, Montreal Gazette, XPressbogg and Guyanese OnLine. She is also the recipient of the Governor General of Canada Caring Canadian Citizen Award.