Who was Henrietta Lacks? The Enduring Legacy of HeLa Cells
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“One thing that has not really changed is that we have very disparate access to healthcare in the U.S. The Affordable Care Act (ACA) got a lot closer to universal health insurance coverage by expanding Medicaid, but we still have about 10 percent of the non-elderly population—and they’re disproportionately people of color—who are not covered by health insurance.”
Dr. Christopher T. Robertson. Professor at Boston University’s School of Law
Henrietta Lacks was an African American woman who lived from August 1, 1920 to October 4, 1951. She has come to be known as the “mother of modern medicine,” though during her lifetime, she had no inkling of how great her impact on science—and society in general—would be. As a young girl, Henrietta spent most of her time working on a Virginia tobacco farm before starting a family and moving to the suburbs of Baltimore, where she lived out her years with her husband.
When Henrietta was 31 years old, she sought treatment from Johns Hopkins—the only hospital in the area that treated Black patients, because she felt a painful knot in her womb. There, a doctor took a biopsy of a mass and she was told that she had cervical cancer. Unfortunately, it had already metastasized throughout her entire body.
Four months after she was admitted, Henrietta passed away, but prior to her death, samples of her tissue from her mass were taken to be studied without her permission or knowledge. (At the time, there was no established practice for informing or obtaining consent from cell or tissue donors.)
Biologist George Otto Gey was the first to study Henrietta’s cancerous cells. He was shocked to discover an inexplicable abnormality: that they reproduced at a very high rate. And unlike typical cells, Henrietta’s were the first to be observed that could be divided multiple times without dying. Until then, cells cultured for laboratory studies survived for only a few days at most, which wasn’t enough time for scientists to perform various different tests on the same sample.
While Henrietta’s body was still at Johns Hopkins’ autopsy facility, Gey sent his lab assistant to harvest more of her cells. From there, Gey was able to start a cell line by isolating one specific cell and repeatedly dividing it, creating an “immortal” line known as HeLa cells.
After the rest of the scientific community caught on, demand for HeLa cells spread all over the world to be used for research in cancer, AIDS, the effects of radiation and toxic substances, gene mapping, and numerous other scientific pursuits. In 1955, they were the first human cells successfully cloned. However, Henrietta’s family wasn’t informed until decades later that their mother’s tissue had been harvested, reproduced, and distributed around the world.
A science writer named Rebecca Skloot’s interest in the story was sparked when she was a teenager taking a community college biology class. Eventually, after years of research and interviews with the Lacks family, she published a book called The Immortal Life of Henrietta Lacks in 2010, which brought international attention to the little-known story.
Now, Henrietta Lacks’ name is widely known in the world of academia and Skloot’s book is even used as course material on college campuses. Henrietta’s story continues to be relevant to this day for the conversations that it brings up around patient privacy and racial inequities in healthcare.
We talked to a scientist and expert in health law to understand the full implications of Henrietta’s impact and what her legacy means today.
Meet the Expert: Christopher T. Robertson, PhD, JD
Dr. Christopher T. Robertson is a professor at Boston University’s School of Law. His interests include bioethics, professional responsibility, conflicts of interests, criminal justice, evidence, the First Amendment, racial disparities, and corruption.
Dr. Robertson has served as visiting professor at Harvard Law School, NYU Law, and the London School of Economics, and as a visiting scholar at the Brown University Policy Lab.
The Complicated Debate Over Compensation & Human Tissue Ownership
One striking irony in the Lacks story is the fact that the descendants of Henrietta Lacks have lived in poverty for most of their lives, despite that their mother’s contribution to science virtually launched a multi-billion-dollar industry and led to 17,000 U.S. patents.
One of Henrietta’s daughters, Deborah, has even spoken out about her own inability to get health insurance. Her son Lawrence has also said that his deceased mother would be “horrified that Johns Hopkins profited while her family to this day has no rights.”
In recent years, members of the Lacks family have sought compensation from Johns Hopkins. But hospital officials replied in a statement that it never patented HeLa cells and does not own the rights to the cell line, reiterating that when the cells were taken, there was no established practice of obtaining consent from donors, nor were there any regulations on the use of cells in research.
Even so, it’s difficult to reconcile the current financial situation of Henrietta Lacks’ living family considering the magnitude of her contribution to science.
This conflict drudges up an old debate about the ethics of the sale of human tissue. The National Organ Transplant Act, which was passed in 1984, makes it illegal to sell or buy human organs in the United States. This law disincentivizes people from selling irreplaceable organs in desperate financial situations.
Renewable tissue, however, is a bit of a different story. “Under federal law, we allow the sale of tissue, but there isn’t really a substantial market for it, in part because … there are plenty of opportunities to get these cells [with patients’ permission from biopsies],” Dr. Robertson said.
In most cases, the scientific findings from most tissue samples don’t result in a multi-billion dollar industry. Even in the rare case that it does, like that of HeLa cells, the market value of a tissue sample is usually unknown until years after the actual donation has been made. So then the question becomes, should donors be entitled to compensation in the case that their donation results in a substantial financial gain?
The Lacks family is not the first to ask this question. In Moore v. Regents of the University of California, a man named John Moore, who had his spleen removed during his treatment for hairy cell leukemia, later discovered that his physician at UCLA developed a highly lucrative cell line from his tissue, which was patented for commercial use in the 1980s.
In the end, the California Supreme Court decided that Moore did not have a property interest in his cells, on the basis that giving patients property rights would hinder research by restricting access to the necessary raw materials and could destroy the economic incentive of scientists to conduct important medical research.
This view has become a widely accepted standard. Most U.S. courts rule against family members who sue researchers or universities over the “improper commercialization” of their dead family member’s tissue or body parts.
Some experts on the issue propose alternative forms of payment, or gifts, in cases where tissue donations result in substantial financial gain like Henrietta’s did. But that presents a new set of problems.
Compensating donors for their contributions conflicts with protecting patient privacy. If we keep track of donors’ identities, we compromise de-identification, the primary tool for protecting the privacy of donors, which Dr. Robertson explored in an article for the Washington Post in 2016.
“If we were to go back and try to figure out who all to pay for various tissues that were extracted decades ago, I think it would sort of be a fool’s errand,” Dr. Robertson said.
“Instead, I think we should focus on situations where people were harmed, where people were exposed to toxic substances and were harmed or killed. That’s the sort of situation where compensation makes a lot of sense.”
Unfortunately for the Lacks family, there is no clear answer as to where compensation should come from, and it seems that no involved parties are willing to step up to the plate. The injustice remains a question of debate that divides the bioethics and scientific communities.
Changes to Patients’ Privacy
The topic of patient privacy is another major theme explored in Skloot’s book. During Henrietta’s time, physicians were not required to obtain consent from patients to study their tissue samples. In 1991, the Common Rule was established to ensure that all biomedical research conducted on human subjects was done ethically, including the requirement to obtain permission from patients to conduct research on their tissue samples.
For more than two decades, the Common Rule was left untouched. But with more research being conducted than ever before and new technological developments entering the scene, especially those related to genomics and informatics, there were new concerns related to privacy and confidentiality for the government to consider. So, in 2011, the Department of Health and Human Services (HHS) and other agencies began to reexamine the Common Rule, eventually proposing changes to how medical research should be done in 2018.
“The [Skloot] book became sort of a rallying cry that we need to do a better job with documenting informed consent, at the very least,” Dr. Robertson said. “I think part of that debate over the revision was motivated by the book, which really tried to emphasize the importance of this sort of documentation.”
According to the U.S. Department of Human Services, the changes implemented “new steps to better protect human subjects involved in research, while facilitating valuable research and reducing burden, delay, and ambiguity for investigators.”
However, some points in early versions of the revision, which were meant to protect patients, proved controversial among scientists—one being a requirement for physicians to obtain new consent forms from patients to use their leftover specimens from previous research in new low-risk studies. The proposed rule would have required written consent for broad future use of such de-identified samples.
This change would have been highly costly, as institutions would have had to implement systems to track the influx of consent data. Critics feared that small hospitals and clinics would simply stop providing samples to researchers, as a result. Some also worried that retaining a link between samples and consent forms would create new privacy risks.
A final version of the Common Rule (without the new biospecimen provisions) went into effect in January of 2019. Today’s patients are free to decline to let identifiable samples taken from them be used for research. But if they say yes, they can’t expect any financial gain later.
Race & The Troubling History of American Medical Research
Perhaps most importantly, the treatment of the Lacks family also harkens back to our country’s dark history of using African Americans as guinea pigs in scientific pursuits. There are countless examples, but one of the most prominent was the “Tuskegee Study of Untreated Syphilis in the Negro Male,”, informally referred to as the Tuskegee Syphilis Experiment, which was conducted between 1932 and 1972 by the United States Public Health Service and the Centers for Disease Control and Prevention (CDC).
The purpose of the study was to observe the progression of untreated syphilis. Although the 600 impoverished African American men who participated in the study were told that they were receiving free medical care by participating in the study, they were actually given placebos disguised as medicine, diagnostic procedures, and other ineffective methods as treatment.
None of the men were treated with penicillin, despite the fact that the antibiotic was widely available by 1947 and had become the standard treatment for the disease. But by the time the details of the study were exposed in 1972, 128 patients had died directly from syphilis or from related complications.
In the early 1900s, doctors also forcibly sterilized women who were deemed “mentally or morally unfit for reproduction,” the majority of whom were Black. In a number of states, this practice continued into at least the 1970s.
Events like these, combined with African American individuals’ own personal experiences with the healthcare system, have fostered a lingering distrust of the healthcare system among the Black community. In the U.S., only six out of 10 Black adults said they trust doctors “to do what is right most of the time,” compared with eight of 10 white people. About half (56 percent) of Black people said they “mostly trust their local hospitals,” compared with 70 percent of white people.
And there are various studies to support that they are right to feel this way. A 2016 study found that medical trainees and residents thought that Black patients were less susceptible to pain than white patients, a racist misconception that dates back to the days of slavery. So it’s no surprise that Black patients are generally sicker and suffer higher mortality than white people in the U.S., or that Black mothers are three times as likely to die during or after childbirth than white mothers.
“Patients of color also tend to get better healthcare and better outcomes if they’re treated by physicians and nurses of color,” Dr. Robertson said. “It’s an example of how we today are still wrestling with race and how we have a predominantly white physician workforce, which may not be able to serve the full population in the U.S. the way we hope.”
One 2019 study compared the short-term health outcomes of Black men assigned to Black doctors against those of Black men assigned to non-Black doctors. The results showed that Black patients who were assigned Black doctors got more preventative services and care.
Race & Health Insurance in the U.S.
On top of everything, people of color are also far less likely to be insured in America. As of 2018, the uninsured rate among African Americans was 9.7 percent, while it was just 5.4 percent among whites. To Dr. Robertson, this is one of the most important takeaways from the Lacks case.
“One thing that has not really changed is that we have very disparate access to healthcare in the U.S. The Affordable Care Act (ACA) got a lot closer to universal health insurance coverage by expanding Medicaid, but we still have about 10 percent of the non-elderly population—and they’re disproportionately people of color—who are not covered by health insurance.”
That comes out to about 29 million Americans.
The ACA has caused the uninsured rate among the Black community to decrease somewhat, but the playing field still isn’t level. The average American family spends $8,200 (or 11 percent of family income) each year on premiums and other out-of-pocket healthcare costs. However, for African Americans, the average annual cost for health care premiums is almost 20 percent of the average household income.
The fact that the Lacks family is among the many African American families in the U.S. struggling to receive healthcare brings the story full circle. While we have addressed issues about patient privacy and medical malpractice, we have still failed to correct the profound racial inequality that has infiltrated our healthcare system.
“What we still need to do is to finish reforming healthcare so that everyone has access to good healthcare in all locations across the country,” Dr. Robertson said. “And we still have this sort of hodgepodge of a healthcare system that isn’t serving people like Lacks even to this day. So I think those larger issues of systemic reform are what’s essential from this story.”
