Trust can disappear in an instant and take generations to gain back. The story of Henrietta Lacks’ immortal cancer cells is a stark reminder of that. Its loud echoes partly inform our present, as sections of the population disbelieve remarkable vaccine developments. If doctors treated your predecessors like second-class citizens, why should you trust them now?
Henrietta Lacks’ cells have done astounding things. They went to space. They helped us understand the effects of radiation from a nuclear bomb. They continue to cause millions of dollars in damages each year by contaminating laboratory cell cultures the world over. Importantly, they gave us precious insight into cancer and helped us develop drugs for a constellation of diseases. They have become workhorses of the modern biomedical laboratory and an item that can be ordered from a catalog by looking up four letters: HeLa.
Cell culture is the process of keeping cells alive in the laboratory. Our organs, like our heart, skin, and brain, are made up of tissues, and these tissues are composed of cells. Testing drugs on cells as a first step—before involving animals or human participants—means we can screen out compounds that clearly do not work or are visibly toxic, but it supposes we can grow cells outside the body. For the longest time, we could not.
Henrietta Lacks was born in 1920 and grew up in the small town of Clover, Virginia, farming tobacco on fields that her ancestors had once worked as enslaved people. In 1951, she went to Johns Hopkins Hospital in Baltimore, Maryland, complaining of a knot in her womb. The gynecologist she saw found a hard mass the size of a nickel on her cervix, the narrow canal that connects the uterus and vagina. The gynecologist thought it weird that she had given birth a few months before, her fifth child, and no abnormality with her cervix had been reported.
She was quickly diagnosed with cervical cancer. The treatment at the time was radium, a radioactive metal that would be placed in a tube and sewn inside the cervix to expose the cancer cells to its radiation. But before that tube would be inserted on the first day of treatment, the surgeon shaved off two small pieces of tissue from an unconscious Henrietta Lacks, one from the tumour and one from neighbouring healthy tissue. Lacks was not told about this. The samples were sent to the laboratory of Dr. George Gey (pronounced “Guy”). He knew that in 1943, mouse cells had been immortalized: they could grow in the laboratory endlessly, without dying out. He wanted to do the same to human cells.
Half a year after the beginning of her first radium treatment, Henrietta Lacks died. But her cancer cells, labelled “HeLa” after her name, did not.
They grew, and grew, and grew in Dr. Gey’s laboratory. They doubled every twenty-four hours. Her normal cells would die after a few days in culture, but her tumour cells, changed by what would later be discovered were multiple copies of the virus HPV, were immortal. They were shipped to fellow researchers, suspended in liquid food known as culture medium and kept warm in the breast pocket of airplane pilots. They helped Jonas Salk test his polio vaccine. They were instrumental in launching the field of virology, the study of viruses. They allowed scientists to figure out the best way to freeze cells without harming or changing them.
Henrietta Lacks’ cells were so formidable in the lab that they took over other cells in culture, unbeknownst to researchers. Scientists thought normal cells spontaneously became cancerous in the lab, but actually, it was simply that their cell cultures were being contaminated and taken over by HeLa cells. Better laboratory practices were desperately needed.
You can now buy a vial of these cells for USD 861. There is a lot of money to be made in selling HeLa cells to research labs, which is why it is particularly poignant to learn that Lacks’ family never received a dime from the commercialization of Henrietta’s cancer cells. As science writer Rebecca Skloot reports in her indelible book on the whole saga, The Immortal Life of Henrietta Lacks, the Lacks family can’t even afford the healthcare they need.
This may be why, last year, they have filed a suit against an American biotech giant for making and selling products that rely on cells taken from Henrietta Lacks without her consent.
As revolutionary as Lacks’ cells have been to science, they have also catalyzed important discussions about medical ethics and they have, by virtue of having been appropriated and commercialized behind the back of a mother and her children, harmed an important aspect of healthcare: trust.
What struck me the most reading Skloot’s The Immortal Life of Henrietta Lacks was how one act performed in 1951—the sampling of cells from Lacks’ cervix for the purpose of research without informing her, an unethical action by today’s standards—has created in her family a profound, metastatic distrust. Skloot herself, in her late twenties and self-funding her investigation, is asked repeatedly by Henrietta’s relatives who is paying her to write this book. Throughout her research into what happened to both Lacks and her cells, trust is given by Lacks’ family, then taken back. Lacks’ children have heard horrible stories about what scientists did to their mom. They hear clones of Henrietta Lacks are walking the earth. They’ve been told their mom was caught in the middle of an atomic bomb. They hear there is a Henrietta Lacks-tobacco plant hybrid somewhere. They imagine the suffering their mother is still enduring at the hands of scientists. As Henrietta’s first cousin, Hector “Cootie” Henry, tells Skloot, “Nobody round here never understood how she dead and that thing still livin. That’s where the mystery’s at.”
It’s impossible to ignore the racial core of the HeLa story. When Henrietta is tested prior to the start of her radium treatment, it is in the ward for “coloured women.” The worries and anger that her relatives have in the following decades with regards to how she was treated and how her cells were taken from her are informed by barbaric experiments done on Black Americans, like the Tuskegee study. (My colleague, Ada McVean, wrote about it here.) Syphilis was allowed to unfold untreated in Black men, even after penicillin was shown to be a safe and reliable treatment. When a population is perceived as undeserving of rights, it is easy to legitimise unethical practices on them. And the justified resentment it later creates can then be weaponized by bad actors, like Robert F. Kennedy, Jr., to convince Black people to stay away from COVID-19 vaccines.
The 20th century saw massive changes in the role that ethics played in medical practice and research, and HeLa cells often found themselves prompting improvements in this burgeoning ethical framework. In 1954, a virologist by the name of Chester Southam told a dozen cancer patients that he wanted to test their immune system. In reality, he was injecting them with HeLa cells to test his understanding of cancer. This snowballed into injections into prisoners and gynecology patients, more than 600 in total, who were told Southam was testing them for cancer. Research in the United States at the time was a Wild West with no formal oversight. This has thankfully changed. Institutional review boards are tasked with reviewing research projects before they begin, to make sure they are ethically sound when human participants are involved. Doctors and researchers must now rely on informed consent, meaning that patients and research participants must be given all the information that they need about risks and benefits in order to make their decision.
As someone who once managed a biobank, in which cells, tissues and DNA from participants are stored for research purposes, I can say that a lot has changed since Henrietta Lacks’ cells were extracted from her without her consent. A biobank is given the green light after binders full of policies and protocols are reviewed by an ethics committee. Potential participants, who might be undergoing surgery and wish to donate leftover tissue to medical research, have to be taken through a comprehensive consent form. As for the tissue that is removed during a surgery and kept in the pathology lab for diagnostic purposes (like a tumour that is mounted in paraffin wax and cut down into thin slices to be looked at under the microscope), I learned something surprising at the time. I was told the hospital did not own the tissue. We were its custodians and a patient could request to have their tissue returned to them.
This may have been one pathologist’s opinion. Patients certainly have a reasonable access to tissue that is removed from them, but the question of who owns the tissue leads to a variety of answers and on-going debates. One thing is for certain: though the situation is far from perfect, we have come a long way from what was done to Henrietta Lacks in 1951, and biomedical research is the better for it.
– Before 1951, scientists could not grow human cells outside the body for very long, which made it difficult to study diseases like cancer and to safely test new drugs
– Cervical cancer cells from a 31-year-old Black woman, Henrietta Lacks, were the first to grow continuously in the laboratory and thus achieve immortality, and they quickly became one of the most important tools in biomedical research
– These cells, called HeLa, were taken without Lacks’ consent and without compensation for their commercialization, and they were used in unethical ways decades ago, which has led to inquiries and improvements over issues of informed consent and research oversight