photo by Wikimedia Commons user Emw
Henrietta Lacks was born a century ago; cancer took her life back in 1951. But a part of her lives on in research labs around the world, in the collective consciousness of Black Americans, and in our national conscience.
Lacks, a mother of five, sought treatment at Baltimore’s Johns Hopkins Hospital for persistent vaginal bleeding. Dr. Howard Jones discovered a large tumor on her cervix. A biopsy of the tumor cells was sent to Dr. George Gey, a cancer and virus researcher. Gey had been trying without success to keep human cell samples alive in the laboratory for scientific study. He discovered that Lacks’ cells seemed capable of both prolific and perpetual reproduction in vitro.
Lacks received the radium treatment that was standard at the time, but she died in October 1951 without ever knowing that her cells had been retained for research. Her husband, David, died in 2002 and may never have fully understood either. Although he and Lacks’ children were contacted by scientists who sought blood samples as early as the 1970s, author Rebecca Skloot told The Wall Street Journal that they did not realize at the time that they were part of a research project. Lacks’ children became aware of the full story when Skloot interviewed them for her 2010 book, “The Immortal Life of Henrietta Lacks.” That book, a bestseller, later became a film starring Oprah Winfrey.
The Lacks cells became well known in the scientific community, where they were dubbed “the HeLa line” for the first two letters in each of Henrietta Lacks’ names. Work performed with the cells accounted for many breakthroughs, including work that led to at least two Nobel prizes. But the Lacks family never received any compensation or other financial benefit until Skloot established the Henrietta Lacks Foundation with some of the proceeds of her literary work. The foundation aims to provide scholarships and health insurance for Lacks’ descendants.
The situation is beginning to change. Johns Hopkins, which has taken pains to note that it has never profited from the HeLa cells (and that it was unusual among prominent medical institutions for its willingness in the 1950s to treat Black patients, albeit in segregated wards), has established a scholarship to help students from an urban high school in East Baltimore study science. The university also plans to name a building in Lacks’ honor. Abcam PLC, a U.K.-based life sciences company, recently made an undisclosed gift to the Henrietta Lacks Foundation. Another small donation came from the lab of researcher Samara Reck-Peterson at the University of California, San Diego, which said it will give $100 for each cell line it derives from the HeLa cells. It has created four such lines so far.
For most of the 20th century, there was no generally accepted requirement of informed consent for medical treatment or medical research. The two were often conflated, and people of every race and class were subject to procedures and protocols that we would consider abusive today. But the maltreatment was hardly distributed evenly. People who were poor or Black, or who engaged in behavior seen as deviant, such as homosexuality or promiscuity, were far more likely to fall victim.
Forced sterilization of such individuals was widely practiced in this country in the first half of the century. The Supreme Court endorsed the practice, 8-1, in the 1927 case Buck v. Bell – a case that was virtually staged to secure ratification by the courts. The procedure was carried out on Carrie Buck, a teenage mother who gave birth after a relative of her foster parents raped her. Buck was institutionalized for “feeblemindedness.” The Supreme Court found that the hearing and appeals process that preceded her sterilization met the constitutional requirements of due process. Buck’s daughter was placed with Buck’s former foster parents; the little girl died of an illness at age 8. Buck lived until 1983 and was later found by interviewers to be of normal intelligence. She was buried next to her daughter in Virginia.
Buck happened to be white. But many of the 70,000 forced sterilizations conducted in this country targeted members of racial minorities. This was also the period of the infamous “Tuskegee Study,” in which – under U.S. government auspices – 600 Black men from Alabama were recruited to study the effects of untreated syphilis. They were told they were being treated for “bad blood.” In reality, doctors took pains to ensure that they were denied treatment of any kind, even after penicillin emerged as an effective standard of care. Researchers went as far as providing lists of their subjects to local doctors and the state health department; they requested health care providers deny treatment if the subjects sought help outside the study.
The study went on, incredibly, from 1932 to 1972. It stopped only after it was exposed in a front-page New York Times story. Legislation mandating informed consent followed soon after, but nobody was ever prosecuted in connection with that exercise in human experimentation. This is remarkable, especially when you consider that 23 Nazi doctors were put on trial at Nuremberg after World War II. Fifteen were convicted, and seven were hanged.
The history of the medical misuse and abuse of their bodies is a major reason why Black Americans have a more distant and less trusting relationship with the medical and scientific community. Of course, so is the historical underrepresentation of minorities in that community. The two are not unrelated.
Times are changing, or at least beginning to change. The remarkable cells that Henrietta Lacks unwittingly donated are still contributing to life-saving medical knowledge, finally with a proper recognition of their source. That young mother’s untimely, long-ago death is now bringing about a belated appreciation of the dignity and respect to which every individual is entitled. Also, perhaps, her story is a reminder that superior moral stature comes from things we do that are more significant than the simple act of donning a white coat.