Ethics, Science and USPHS at Tuskegee: Lessons 50 Years Later

On this fiftieth anniversary year of the US Public Health Service (USPHS) halting its study at Tuskegee University, I remember the day that I first heard about "Bad Blood."??I was eight years old, sitting with old and middle-aged Black men, farmers, and businessmen, cleaning fresh-caught squirrel, rabbit, and catfish in rural Oklahoma. I was happily working with my grandfather's sons, brothers, and cousins to prepare meat to sell alongside harvested fruit and vegetables from their fields. Together they operated their market, and one of the farmhands died a few weeks earlier. He'd recently moved from rural Alabama, had become very ill, and refused to seek any medical treatment. Sadly, they talked about him having "Bad Blood," a weakened heart, and drinking too much to salve his pain.

Their disdain, fear, and lack of trust for doctors, scientists, or any government official for that matter was palpable. These raw emotions were understandable, as the stinging of the Tulsa riots lingered, anti-lynching legislation though first introduced in 1918, had yet to pass, and experimentations on Black men in the rural south, both rumored and factual, had endured for nearly 75 years.?

In the United States, a study conducted between 1932 and 1972 by the United States Public Health Service (USPHS) and the Centers for Disease Control and Prevention (CDC) on nearly 600 rural black men persisted. The US government was absolved of liability until the 1997 apology. These men were primarily sharecroppers and farmers, just like the men in my family. The study lasted fifteen years until penicillin was proven to be an effective treatment for syphilis in 1947 and nearly 25 additional years following recommendations for this treatment.

The study violated all bioethical, clinical research, and humanitarian principles.

1.?????????Patient autonomy (self-governance). Black men were denied informed consent and autonomy to make informed health decisions. This principle requires that the patient have autonomy of thought, intention, and action regarding health care procedures. For a patient to make a fully informed decision, they must understand all risks and benefits of the procedure and the likelihood of success. Therefore, the decision-making process must be free of coercion or coaxing.

2.?????????Nonmaleficence (do no harm). Black men were denied access to approved and effective treatments. Although penicillin was an effective treatment for a quarter-century, nurses could not share information on treatment. Any promotion of penicillin and other therapies was considered misinforming and detrimental to the study.

3.?????????Beneficence (do good). Black men were coerced for non-participation. For several sharecroppers or farmers that asked for treatment, sought treatment on their own, or refused to participate, they were threatened with withheld work, withheld pay, increased debt, and no debt forgiveness or loss of employment. If they were seen as too much of a "trouble-maker," they could be kicked off the land because they didn't own it.?

4.?????????Justice (fairness). The study was unjust as only rural, poor, Black men were recruited, jabbed, and prodded. Most suffered pain for years, often debilitating, leaving them unable to work, learn, or build family and community. The study robbed a generation of people and potential.???

5.?????????Veracity (truthfulness). Maliciously, USPHS conducted the study under the auspicious of scientific advancement for the country and the "race." Medical professionals executed unnecessary lumbar punctures and faux treatment regimens and facilitated the proliferation of cadavers for dissection under the banner of scientific progress.

Despite all this history, echoes of this study reverberate in population health policies and medical practice. Today, for example, Black Americans have the most distrust of scientists, hospitals, and doctors. We are just ten years removed from the FDA rejecting NIH/NIAID press for ill-conceived and erroneously tested "race-based" medicine. Studies show that medical discrimination in recognizing others' pain and current population health methodologies and algorithms are inherently harmful to Black people and detrimental to managed care.

Inconsistent messaging, conflicting and irrational health policy and heavy-handed censorship continue to erode public confidence in public health, medicine, and clinical research. The social covenant is woven strong but remains under repair. We ignore this fact to our detriment.

The USPHS Syphilis Study at Tuskegee was a multi-generational tragedy. I remember and honor these men as —the lessons remain unabsorbed.