Henrietta Lacks
—Chrissie
Listen here:
There are few things that can be said with absolute certainty, but I can say that anyone listening to this has benefitted from the HeLa line of cells. These have been used to develop treatments and vaccinees for almost seventy years. It was the first line of human cells that would self-replicate in the lab and were incredibly responsive in research. But, they were obtained without the consent of the doner, and have been central to medical treatments that have earned millions of dollars for the developers, without compensation to the family of the woman who provided them, Henrietta Lacks.
She was born on 1 August 1920 in Roanoke, Virginia, one of ten children of John and Eliza Pleasant. Her given name was Loretta, but she changed it to Henrietta by the time she got to her teens. When Eliza died in childbirth in 1924, John was left a widower with ten young children, so he took them to the home of his wife’s family in Clover, Virginia, where they were spread amongst relatives to be raised. Henrietta ended up with her maternal grandfather, Thomas Lacks, a tobacco farmer who lived in a cabin that had been part of the slave quarters on the land on which the family had been enslaved. Thomas himself had been born into slavery in 1861, the son of the plantation owner Albert Lacks and his slave, Maria. After the Civil War, Maria stayed on as a sharecropper and had four more children with Albert.
Even though she was four years old, Henrietta worked the tobacco fields alongside her family. She attended the closest Black school, two miles away, through the sixth grade, at which point her labor was needed on the farm. Two years later she gave birth to her first child, Lawrence. The child’s father was her cousin, David Lacks, who was five years her senior. The couple had four more children, one more, Elsie, before they married in 1941 and three after, David, Deborah, and Joseph (later Zakariyya Bari Abdul Rahman).
Like many Blacks in the early 1940s, the Lackses moved from their hometown to take advantage of the increasing number of relatively high-paying jobs in the growing war industry. David got a job at a Bethlehem Steel plant in Sparrow Point, Maryland. Shortly after their move, they were forced to institutionalize their eldest daughter, Elsie, who was developmentally disabled, because they could no longer care for her at home. It is now understood that she suffered from cerebral palsy. She died at age 15, only a few years after her mother.
Sometime during, or immediately after, her final pregnancy, Henrietta developed a cervical tumor. She was treated at Johns Hopkins in Baltimore, Maryland. It was one of the few hospitals at which African Americans could get extensive treatment in the area and who was also willing to give low-cost or free treatment. The price of this treatment, however, was high: there was an understanding that the patients would provide samples for research being done at the labs in the hospital. Their consent was not requested or required. This is one instance in a long tradition of treating poor, and particularly Black, Americans as test subjects. At the time Henrietta was being treated, medical researchers were looking for ways to replicate human cells in the lab to test theories about diseases and their treatments. The cells from her biopsy were given to one of these researchers, George Otto Gey, who noted that, unlike all of the other cells with which he had worked, Henrietta’s stayed alive in lab cultures and reproduced quickly.
Henrietta was treated for, and died of, the cancer at Johns Hopkins. Aware of the unusual nature of her cells, Gey ordered that more be harvested from Henrietta’s body while it awaited autopsy. The cells were labeled HeLa, according to Gey’s method of using the first two letters of the doner’s first and last name. This was also done without her or her family’s consent. At the same time her cells were being prepped for research, her family buried her in an unmarked grave in the Lacks’ plot on the former plantation in Clover, Virginia.
The HeLa cells quickly became a base for medical research worldwide. Because a single one of the cells could be isolated and reproduced, experiments could be conducted without the medium itself acting as a variable. The first major study for which they were used was the development of the Polio vaccine. The HeLa cells were so useful in this testing that a cell culture lab was established for their mass production at another place where Black Americans had been experimented on without consent, Tuskegee. This work allowed the first human trials of the vaccine to begin in 1954. One can imagine Henrietta’s children and grandchildren getting this vaccine without ever knowing how important their own genetic ancestry was in its creation.
The cells have been used in many different areas of research since their introduction in 1951, including the study of various types of cancer and viruses, the mapping of the human genome, and the effects of zero-gravity on human tissue. They were especially useful for developing a vaccine against the virus that caused the cancer which killed Henrietta Lacks, the human papilloma virus (HPV). Its developer, Harald Zur Hausen, won a Nobel prize for his work. The HeLa chain was also used in research that developed the COVID-19 vaccines. It was an accidental contamination of HeLa cells in 1953 that led to the ability to identify and count chromosomes, which made possible the study of chromosomal disorders, such as Down Syndrome.
These are just a few of the thousands of applications to which the HeLa cells have been instrumental. But, they did not remain the only cell line available for research for long. Other cell lines were developed from other peoples’ donations and it was because of these other cells that the Lacks family finally discovered what had been done. As work was done on other cell lines, researchers found them contaminated with HeLa cells again and again. In an attempt to develop a differentiation, researchers began contacting the Lacks family, asking for blood donations that could be used to separate HeLa from everything else. Because of this, they found out in 1975 that Henrietta’s cells were being used for medical research, and had been for over two decades.
The Lacks family has spent the time since then trying to get some measure of control over the situation. Under US law, they did not have any right to benefit financially from the use of Henrietta’s cells because the Supreme Court case Moore v. Regents of the University of California in 1990 decided that discarded cells are not the property of the person from whom they were taken. This means they can be commercialized without any sharing of profits to the person or their family. The Lacks children have been clear that they do not want to profit from this, despite the fact that they lived in severe poverty during the time that others were making millions of dollars with their mother’s cells. The Moore case added to the publicity around the use of Lacks’ cells, which led to the adoption of the Common Rule in 1991, which requires that donors be informed if their tissue is to be used in research and that the anonymity of any donor be maintained. The Lacks family has been somewhat successful in keeping their own genetic information private, something which became an issue when the full genome of the HeLa cells was published as part of the Human Genome Project. The family is now included in the decision-making about who has future access to the genetic sequence from the National Institute of Health, though there is no way to control access to what is already available. The family has sued some of the companies which profited greatly from the use of Henrietta’s cells and in July 2023 one of those suits, against Thermo Fischer Scientific, was settled for an undisclosed amount.
Their story has become well-known since the 2010 publication of Rebecca Skloot’s biography of Henrietta and her cells, The Immortal Life of Henrietta Lacks, and the 2017 movie based on it.