OP-ED.
ETHICS AND MEDICINE.
In the midst of this pandemic, we are facing an outright race to develop an effective vaccine to protect against this scourge. This race is redolent of the previous competition to conquer outer space and bragging rights are in the balance among the contenders. What should be a public health matter is entwined in politics and any vaccine so quickly developed may have an asterisk with it, an exclamation point about the suspicion growing about its safety, efficacy. Let’s hope that the first manufactured vaccine will not be a rushed one. Hanging in the balance will be long-lasting damage as an unintended consequence.
Recruitment of patients for any vaccine, always problematic, becomes an obstacle among the African American population where suspicion reaches fever pitch. It cuts across a historical fault line. We may have some difficulty understanding this attitude since back home patients tend to be gullible. However, we need to be aware of some historical facts that have stained our profession and nowadays, we may be innocent bystanders or guilty by association, a nuance without any practical difference. Whether we are aware of it or not, like it or not, we are part of the establishment and will bear the brunt of patients’ misgivings or ire.
Our colleague, Dr. Vladimir Berthaud as chief of Infectious Diseases at Meharry Medical School is the principal investigator at his site for a vaccine trial. He reports that African Americans’ reluctance to participate is a conflation of events: past ethical lapses, recent mistreatment at the hands of police, Trump’s offensive tweets, their higher death rate when suffering from COVID-19. Sometime when he is interviewed, he becomes the subject of pointed questions about his commitment, professional integrity and so on. As he states, the miscommunication and confusion highlighted at the highest level of government makes recruitment in vaccine trials extraordinarily difficult. Many of us have faced the same grilling making for an awkward conversation. We have all witnessed the recurring assaults both physical and verbal lobbed at African Americans over the past year. However, a lot of us are not so familiar with some significant past historical facts.
To the extent we become fluent with these facts and are able to have an intelligent conversation, this will make it easier to state our position of empathy for the patients’ concerns, our ethical conviction of “Do no harm,” our sacred creed taken during our recitation of our Hippocrates’s oath. So, what are some of these harrowing cases that were laden with ethical lapses?
A-Tuskegee Syphilis Experiment Study. The CDC official website chronicles this shameful episode at www.cdc.gov/tuskegee/timeline.htm. Tuskegee University was the creation of Booker T. Washington in 1881 as the site of formation of technical cadre of African Americans and where the famous Washington Carver made some groundbreaking discoveries in Tuskegee, Alabama. Starting in 1932, under the auspices of the US Public health Services, a study was conducted about syphilis among 600 + Negroes. For the next 40 years, despite the development of penicillin and its success against the disease, none of the recruited patients received any treatment and none of them was aware of the fact they were being used as guinea pigs. All they knew was they had “bad blood,” a colloquial term for the disease. What is very embarrassing is the fact that as late as 1969, the local chapter of NMA as well as AMA supported the study according to the CDC timeline cited above. Again, according to the official timeline (CDC), Dr. Eugene H Nibbles Jr., a prominent African American physician, spearheaded the effort to start the study. According to his official bio on Wikipedia, he was well aware of the fact that no treatment was offered. Eunice Verdell Rivers Laurie was the nurse coordinating the study. She was also an African American. This matter has been litigated in the press over the years and some apologists point out that clinical study being conducted at black institutions on a par with others was the medical reason behind Dr. Nibbles’s decision to conduct the experiment. This explanation doesn’t pass the smell test. There’s no justification ever for withholding treatment to an afflicted patient seeking care unless the patient is of sound mind and refuses. In 1972, when the story about the true nature of the study broke out in the press, there was an uproar and the study came to a close. A year later there was a law passed for reparation, a pittance of 10 million dollars for the patients and their families for paying for their medical bills. President Clinton on May 16, 1997, issued an official apology about this mishap during a White House ceremony. This sad experiment forever etched into people’s minds a lasting suspicion of the medical establishment, irrespective of the provider’s ethnic background.
B- The Vivien Thomas story. A very interesting chapter in the annals of African Americans and Medicine is the story of Vivien Thomas and Alfred Blalock at Johns Hopkins Hospital. Anyone interested ought to read his autobiography “Partners of the Heart,” (University of Pennsylvania Press, 1985). It is also available as a biopic of the same title. Basically, Vivien Thomas was an intelligent black man who always wanted to be a physician. A victim of the Great Depression, he couldn’t attend college and when he did try to enroll at a black college, he was turned down. He ended up working as a janitor at Vanderbilt University Hospital. In 1930, he met a young white doctor named Blalock. He was given a chance to be a lab assistant and he self-taught surgery on animals. He perfected the art to the extent that when Blalock transferred to John Hopkins in 1941, he took him along. There began a collaboration spanning decades where Thomas practiced surgery on animals, then taught Blalock, guiding him through open-heart surgery but getting no recognition for his work. There was never any mention of his participation in the first-ever case of open-heart surgery; it was successfully performed on a blue baby… The historical fact is that Blalock would not dare operate without Thomas’s supervision, literally! Besides Blalock, Thomas trained countless other surgical residents and attending physicians at the institution. This type of procedure helped the hospital generate lots of revenues but as luck would have it, Vivien Thomas was paid a meager salary and he had to work as bartender at night at receptions attended by the very surgeons that he trained during the day to make ends meet! This was at the very least unethical and downright an unequal treatment of a professional individual. Decades later, he would receive an honorary medical degree by Johns Hopkins and would become an official member of the faculty. Strangely enough to this day, Johns Hopkins has named a building after Blalock and upon entering it, portraits of both men are to be seen. If a building is to be named after pioneers of cardiovascular surgery, wouldn’t it more appropriate to have both names included? This type of treatment of a talented Afro American who helped in the furtherance of cardiovascular surgery reeks as an after-thought and begets nothing but rancor from African Americans.
C-Henrietta Lacks story. Johns Hopkins resurfaces again. One needs to remember the historical context. Baltimore, geographically north of the Mason-Dixon line was for all practical purposes of the mindset south of such a line, just like Washington, DC was for a good part of the previous century. Therefore, the local African American population received far less than equal treatment at the hands of the establishment. Henrietta Lacks was a poor black woman who had cervical cancer; her cells were harvested 61 years ago by the institution without her knowledge or consent. They were easy to grow and lent themselves well to all sorts of experiments. Unbeknown to the patient and her family after her demise, the harvested cells were shared, sold commercially and available all over the world to study cancer. The cells are called HeLa, from Henrietta Lacks. This contribution to the furtherance of scientific knowledge is not given its proper due. Johns Hopkins as an institution has yet to officially honor this humble woman. Were it not for a curious white college student, Rebecca Skloot, who singlehandedly carried out an investigation and published a book about the life of Henrietta Lacks, her story like so many others, might have remained unknown to the rest of the world. The book was published in 2010, The Immortal Life of Henrietta Lacks, Crown Books. A movie based on the book is also available. A silver lining of this investigation is the establishment of the Henrietta Lacks Foundation created by the author, henriettalacksfoundation.org.
D-Human Radiation Experiments. The official website of the Atomic Heritage Foundation atomicheritage.org is a good source to peruse through to become well acquainted with this horrific human experiment. Although it didn’t include only members from minorities, they were disproportionately represented. In a nutshell, as a side endeavor from the Manhattan Project, a highly secret undertaking by the federal government to develop the first atomic bomb, the idea of investigating the excretion rate of plutonium, uranium in humans came to life. The first person enrolled, without his knowledge was an African American at Oak Ridge in Tennessee. 30 people at different labs throughout the country were injected with highly radioactive material and studied. An official investigation took place in the mid-nineties under Bill Clinton when Hazel O’Leary, an Afro American, was the Secretary of Energy (incidentally she was the ex-wife of a late colleague surgeon) and appropriate guidelines were stipulated to prevent such unethical investigations in the future.
Denying the above facts won’t help us. They were vicious acts committed without regard for patients’ safety and can’t be condoned no matter what the goal could have been. We were not part of the decision-making process but as part of the establishment, we need to be aware of them and not act as if they never happened. Being on the side of the patient entails we acquire enlightenment about our medical history, as they say, warts and all.
REYNALD ALTEMA, MD