Eugenics, Tuskegee & Henrietta Lacks: A Legacy of Betrayal

There is a long and winding history as to why minorities haven’t been properly involved in research and why they also tend to be very wary of participating.

In the 1880s, the “Father of Modern Statistics,” Sir Francis Galton, a cousin of Charles Darwin, popularized the pseudoscience called eugenics. The “task” of eugenics was “to encourage fit and fertile matings among those persons most richly endowed by nature” and “to devise practicable means for cutting off the inheritance lines of persons of natural meager or defective inheritance.” People considered unworthy to procreate included those with physically weak or allergic constitutions; the feeble-minded, deformed, and mentally ill; alcoholics, criminals, and paupers. What actually happened was the racist targeting of minority populations. Being born black, poor and “criminalistic,” Native American and alcoholic, or Hispanic and “feeble-minded” made them a target for forced or coerced sterilization. The practice went on for years in public hospitals, prisons, and insane asylums across the entire United States and is a major contributor to why minorities weren’t involved in early research and are wary of participating.

Another gruesome example of unscientific medical research conducted on black men was the 40-year-long Tuskegee Experiment. Started by the Public Health Service in Alabama in 1932, the doctors who ran the Tuskegee Experiment recruited poor black men that had syphilis and didn’t know it. These doctors falsely told the men that they had “bad blood”. The men were given placebos for treatment even after the disease became treatable with penicillin in the 1940s. Penicillin was never administered to the study participants, who were “compensated” with free meals, medical exams, and burial insurance. In the end researchers provided no effective care as the men died, went blind or insane, or experienced other severe health problems due to their untreated syphilis. In July 1972, the Associated Press broke the story of this terrible injustice against minorities, resulting in a class action lawsuit and compensation awarded to the remaining subjects and their families. However, the $10,000,000 settlement, free medical care, and burial expenses were a pittance compared to the lasting legacy of this collective trauma.

Minorities have been taken advantage of in research in other ways as well. Few people know about the commercialization of Henrietta Lacks’ “immortal” cancer cells until a book about her life was published in 2010. In 1951 John Hopkins Medical Center extracted her cancer cells, now called “HeLa” cells, during a biopsy at their “Negro ward”; the cells were kept and used for research without Lacks’ or her family’s knowledge. Lacks was a poor black tobacco farmer who died the same year she came in to the hospital, yet her extracted “HeLa” cells went on to enable cloning, gene mapping, in vitro fertilization, the polio vaccine, and many types of cancer research. For more than half a century, John Hopkins Medical Center profited from the unique, industrious, and immortal cells of Henrietta Lacks, while her family remained in poverty.

Because of all these tragedies committed against minorities, the field of bioethics was born. Bioethics is one reason that anyone can confidently enroll in drug, procedural, and device experiments in the 21st century without being fearful of mistreatment. Today’s patients must give their consent to participate in clinical trials. They receive a bill of rights, as well as written and verbal information that ensures they understand the research in which they’re agreeing to participate. At HDP Health we’re working on making this process better by presenting this information to participants at a reading level that anyone can understand. Not only does this help patients better understand the medical research they will be participating in, but it actually increases the rate at which patients enroll into clinical trials.