I have known about the Tuskegee Study for years. The Tuskegee Study is a major factor in why so many African Americans distrust the medical system, and especially, the research arm of it. The Tuskegee Syphilis Experiment ran from 1932 until 1972 (!). African American men who had latent syphilis were followed to see the natural history of the disease. The men thought they were getting free health care and were unaware they were infected. The syphilis was left untreated, despite penicillin being available to cure it. 600 poor sharecroppers were followed to see the course of the disease. 399 had latent syphilis, at least 128 died from syphilis or its complications. Obviously violating ethical standards, when discovered, outrage led to new regulations to protect people in studies. This is one reason why “informed consent” in research is so detailed. Consent is considered vital.
The other effect of the study being found out was that it added more fuel to African American’s distrust of the medical system, especially involving clinical research. This is a major reason many clinical trials have low numbers of African Americans as subjects. It is also why they may be distrustful of a vaccine for COVID-19. You can’t really blame them.
But maybe when they find out that Dr. Kizzmekia Corbett, who is African American, helped design the vaccine, they will be more accepting. She hopes so.
And then I read another story about early inoculations for smallpox and learned things I didn’t know. I wish I had known this hidden history earlier and a little ashamed that I didn’t. The concept of inoculation with a tiny amount of smallpox came from Africa and China. A slave in Boston shared the idea of using inoculation in the early 1700’s when there was a smallpox outbreak. The inoculation with a tiny amount of matter from a small pox lesion, called variolation after the smallpox virus known as variola. This caused a milder case of smallpox which then gave that person immunity. Occasionally the person inoculated got much sicker and sometimes died, which made people leery of the practice. This is a fascinating read and involves Cotton Mather of the Salem Witch Trials fame. The story includes conspiracy theories and blame, with slave owners taking ownership for an idea that was not original, and with others dismissive and fearful of African culture. Our culture of disinformation is not so new, after all.
Later this concept of inoculation was used in Great Britain to inoculate people with a less virulent (not as dangerous) but related virus (cowpox or vaccinia) to prevent smallpox or variola. It worked and vaccinations were born, named after that first vaccinia inoculation.
Now we hope to convince people they are safe and effective and not some conspiracy. Our work is cut out for us.
Wash your hands, cover your nose, keep safe six, check your sources.
And finally, my caveat is that this is my experience and my opinions, which are subject to change as more information is available, and not related to the organization I work for. Thanks for reading.