WEB EXTRA: Honoring the Henrietta Lacks Legacy at Hopkins
and Stephanie Desmon
Date: May 20, 2011
The year was 1951, and by then, George Gey had already spent 30 years seeking what many considered the Holy Grail of medical research: a line of cancer cells that could be grown outside the human body.
Dr. Gey, a prominent cancer and virus researcher at Johns Hopkins, had for years been collecting cells from all patients who came to The Johns Hopkins Hospital with cervical cancer. But each sample quickly died in Dr. Gey’s lab.
If only the cancer cells could be made to grow outside the body, Dr. Gey believed, researchers from all over the world could use them to study the effects of toxins, drugs, hormones and viruses on the growth of cancer cells without experimenting on humans. With such “immortal” cells, Dr. Gey believed he could help settle important questions about how cancer develops.
And along came Henrietta Lacks.
The young mother of five lived near Baltimore’s Bethlehem Steel shipyards and came to The Johns Hopkins Hospital that February complaining of vaginal bleeding. Hopkins, at the time, was one of the few that would treat poor African-Americans. Renowned gynecologist Howard Jones found a large tumor on the young mother’s cervix. A biopsy revealed it was malignant. As Mrs. Lacks was undergoing radium treatment, Dr. Gey’s nearby tissue culture lab received a sample of her cancer cells.
What he would soon discover was that Mrs. Lacks’ cells were unlike any of the others he had ever seen. They didn’t die. Astonishingly, they doubled every 20 to 24 hours in a bath of chicken plasma and nutrients. He had found the Holy Grail.
These amazing cells—called HeLa cells for Henrietta Lacks—have lived on for more than 60 years, in laboratories around the world, in tens of thousands of experiments. They have been used to test the effects of radiation and poisons, to study the human genome and to learn more about how viruses work. They were also crucial to the development of the polio vaccine.
All of it, each discovery, was made possible because of Henrietta Lacks and a dedicated scientist who refused to give up.
The Search for ‘Immortal’ Cells
Mrs. Lacks’ cells couldn’t have arrived at a better time for Dr. George Gey.
Normal cells were first grown outside the human body in 1907, but eventually they all died after they divided about 50 times. Cancer cells, by definition, grow despite their environment and could divide unlimited times. But without the right mix of chemicals for the cells to live in outside the body, they, too, eventually died. So the challenge was not only to find cancer cells that would reproduce endlessly, but to develop a recipe for the environment and nutrients that the cells would need to survive.
Unlike today, when culture medium is mass-produced following tried-and-true formulas, tissue culturing then was in its nascent stage. The lab that Dr. Gey shared with his wife and research partner, Margaret, relied on materials that had to be collected on an almost daily basis. The nutrient-rich brews that they experimented with required a journey to various sites around the city to collect plasma from chicken hearts and calf livers, and a trip to The Johns Hopkins Hospital’s labor ward for human placental blood from discarded umbilical cords.
To make the cultures mimic conditions in the human body, where blood and fluids are constantly moving around cells, Dr. Gey invented the roller tube. This ingenious contraption, holding glass tubes containing samples in nutrient-rich fluids, turned slowly—sometimes just two revolutions an hour, exposing the cells to just the right mix of air and nutrients.
By early 1951, the Gey lab had finally developed a formula for sustaining cells outside the human body. Now, all they needed were the right cells. Enter Henrietta Lacks.
After Mrs. Lacks’ tumor was biopsied, a sample of her cancer tissue was divided into tiny pieces, placed in dozens of the test tubes along with culture medium, then plugged and set into the roller device. Instead of dying, as so many other cervical cancer cells had, Mrs. Lacks’ cells kept on dividing. And dividing.
Unfortunately, Mrs. Lacks had a very aggressive form of cervical cancer that, as science would later tell us, was just the type of tissue Dr. Gey was looking for. But the aggressive nature of the cancer cells had catastrophic consequences for the young mother. Although she underwent surgery and radiation therapy, her cancer metastasized and her condition deteriorated. On October 4, 1951, she died at Hopkins. She was only 31.
Ironically, on that same day, Dr. Gey appeared on national television holding a vial of her cells, which he called HeLa, and pronounced: “It is possible that, from a fundamental study such as this, we will be able to learn a way in which cancer can be completely wiped out.”
A Research Powerhouse
Mrs. Lacks’ cells have not, of course, eradicated cancer, but they have been central to scientific breakthroughs and discoveries for 60 years.
Although they are cancerous, HeLa cells share many traits with normal cells, making them useful in studying protein synthesis, the human genome and how viruses work. Dr. Gey freely shared the cells with researchers around the world, who used them to develop a variety of medicines. HeLa cells were the first to travel into space in an unmanned satellite to see if humans could survive zero gravity.
They made their way around the globe because Dr. Gey wanted his fellow researchers to have access to these immortal cells so they could do their own research to extend the boundaries of science and medicine. He gave them away for free to any scientist who asked.
Chi Dang, today Hopkins’ vice dean for research, says such collegial sharing has always been part of Hopkins’ spirit. “As researchers,” he says, “we don’t do this for the money. If we wanted to make money, we would work in the private sector and not in academic medicine. We’re here to make a difference.”
This scientific generosity was repeated in the ensuing decades as Hopkins researchers Hamilton Smith and Daniel Nathans freely shared the restriction enzyme technology they discovered from HeLa research (which won them both Nobel Prizes in 1978). The technology ushered in the biotechnology revolution.
Ironically, Johns Hopkins Medicine now spends roughly $100,000 a year to purchase HeLa cells for its own research use.
Yet culturing human cell lines became easier after Dr. Gey showed that it was possible. Today, the American Type Culture Collection—a nonprofit organization that provides cultures for science—lists more than 4,000 unique cell lines, over 2,000 of which are human in origin.
The hardy HeLa cells remain powerful. According to a 2002 article in Nature: “Our knowledge of every fundamental process that occurs in human cells—whether normal or abnormal—has depended to a large extent on using HeLa and other cell lines as a model system.… HeLa is still the most widely used human cancer cell line.”
In 1951, some might have considered it science fiction to think that human cells could grow outside of the body for 60 years. When Dr. Gey discovered the powers of Mrs. Lacks’ cells, it was still two years before the double-helix structure of DNA was described, which would open up new understandings of how cells operate, as well as ideas for how to learn more about cells.
At the same time, there is no evidence that Mrs. Lacks was informed about why her cells were taken or that she consented to donating her cells to science. This is not surprising, says Johns Hopkins’ vice dean for clinical investigation, Daniel Ford, noting that it was a different era in medicine. There was no established practice of getting signed permission to take tissue for research purposes. Researchers routinely extracted such cells from many different patients as an accepted part of medical research. Often, patients never knew what, if anything, happened to their tissues.
Much has changed in this relationship since Henrietta Lacks visited The Johns Hopkins Hospital.
Today, every patient admitted to Hopkins—and every other research hospital in this country—is asked to sign a form that, among other things, gives consent for the tissue specimens collected as part of their treatment to also be used for research purposes. Patients who sign it agree that Hopkins will own the samples. Every year, only about a handful of Hopkins patients refuse to sign this consent form.
A more elaborate process is required when researchers wish to obtain samples solely for research purposes. If Dr. Gey today were seeking to obtain cervical cancer specimens that weren’t already being used for diagnostic purposes, an institutional review board (IRB) would need to review and approve his research proposal and the wording of patient consent forms. Specimens are not taken for research purposes unless patients sign this form.
However, says Dr. Ford, it is important for researchers to think of informed consent as an evolving process that can always be improved. “So yes, we are informing patients about the use of tissue for research,” he says. “But we are also currently reviewing that consent form to make sure that the language is understandable. The Johns Hopkins University acts as the steward of these samples so they are used to create the most new knowledge.”
Rather than using the first letters of a person’s name—as Dr. Gey did for HeLa was—the samples are now coded in a way that more effectively conceals the patient’s identity from researchers.
The mandatory IRB reviews did not begin until 1978. At the time of Henrietta Lacks’ visit, Dr. Gey was following standard practice for the collection and labeling of specimens, says Dr. Dang.
To describe the numerous possible potential uses of a biospecimen, much less to anticipate potential future uses, is difficult. To explain these possibilities to a non-scientist is even more challenging. That is why it is so important, says Dr. Ford, to provide the public with more accessible information about basic scientific concepts like cellular biology and genetics, and to constantly evaluate and clarify our policies for handling biological samples and the data they generate.
“We are always working to keep up,” he adds. “And recognizing that research is an ongoing collaboration between investigators and the community is key.”
New Era, New Questions
For more than 20 years, the story of Mrs. Lacks’ contributions was unknown, in part because her identity had been protected out of concern for patient confidentiality. Her name remained a secret until 1973, when articles in research journals identified the source of HeLa cells as Henrietta Lacks. In 1976, a Rolling Stone article revealed the cells’ true namesake to the general public.
With the identification of Henrietta Lacks as the human being behind HeLa cells, questions about whether there is a legal or moral obligation to compensate a person if something of eventual commercial value comes from their cells or genes started to arise.
While these are understandable questions today, in 1951 they wouldn’t have occurred to anyone, notes Dr. Ford. Neither Dr. Gey nor Johns Hopkins ever attempted to use these cells for financial gain, but rather made them available to other researchers across the world. When Mrs. Lacks was receiving treatment, it wasn’t customary for research institutions to seek to commercialize their findings. Important discoveries, such as HeLa cells, were freely offered to the scientific community to advance science and save lives.
Then, in 1980, the Bayh-Dole Act gave universities the intellectual property rights of discoveries made possible by federal funds. What followed was an explosion in biomedical research, including the biotech revolution, with thousands of new patents being filed. The Bayh-Dole Act is widely credited with solidifying America’s dominance in biomedical research and discovery.
Even today, with that potential for commercialization, it is hard to imagine how compensation arrangements with patients would work, says Dr. Dang. The pathway from discovery to eventual treatment is complex and can take many years—if not decades—as discoveries are patented by universities, handed off to private industry, developed and tested. Some innovations may result from discoveries made decades earlier or from samples taken a generation ago, he points out.
Although individual donors may have cells that turn out to be research powerhouses, such as HeLa, many innovative discoveries are based on the contributions of hundreds or thousands of tissue samples. For instance, technology allows researchers to screen the genomes of thousands of patients with the same disease to identify aberrant genes that are responsible for the condition.
In such cases, the value of one sample’s contribution would be extremely difficult to ascertain.
Rather than consider tissue samples as a commodity to be sold, says Dr. Dang, many patients see it as a way to make a contribution to society, a contribution to science. Often, patients give samples the same way they sign up to be organ donors on their driver’s license—with no expectation of financial gain. “We are a country, one way or another, of philanthropists,” Dr. Dang says. “We give of ourselves.” It’s impossible to know just how your cells may benefit humanity, he notes, and even a consent form cannot inform patients of all of the possibilities.
“As technology changes,” and more is learned, Dr. Dang adds, “ethical boundaries get redefined.” Today, for example, it’s possible to take a tube of a patient’s blood that would otherwise be discarded as medical waste and turn its cells into what’s known as induced pluripotent stem cells. These cells can then be converted to any other type of cell—for instance, nerve cells from a patient with Lou Gehrig’s disease, to better understand that condition.
Is there a moral responsibility to tell patients, during informed consent, that the cells taken for diagnostic tests could actually be immortalized as stem cells? Many researchers, says Dr. Dang, believe that there is an obligation to discuss this possibility with patients.
Another issue is the challenge of preserving the privacy of patients who give their tissues. Although a specimen must be coded in a way that obscures donor identity, researchers cannot guarantee that their sample cannot be traced back to them. “An individual’s DNA is the best form of identification,” explains Dr. Ford, and, theoretically, the same technology used in paternity tests could be used to link a de-identified sample to an individual.
Research leaders at Johns Hopkins are among those who have recently raised such issues to the National Institutes of Health, which holds vast repositories of tissue samples, in the hope of clarifying this issue. In fact, says Dr. Ford, the topic remains a pressing challenge, with one senior NIH official declaring it a top priority. “NIH says there is no consensus right now,” Dr. Ford adds, “but we understand that we need to come to a definitive policy on it.”
Dr. Ford is also director of the Johns Hopkins Institute for Clinical and Translational Research (ICTR), one of 60 medical research institutions working together as a national consortium to improve the way biomedical research is conducted across the country. The consortium, funded through the National Institutes of Health’s Clinical and Translational Science Awards program, shares a common vision to reduce the time it takes for laboratory discoveries to become treatments for patients. Creating better ways to engage communities and increase their sense of partnership with researchers is essential for the process.
Honoring Henrietta Lacks and Other Tissue Donors
Recent public interest in HeLa cells has been sparked by the 2010 book The Immortal Life of Henrietta Lacks, by science writer Rebecca Skloot. The book has provided an opportunity to have a deeper conversation with the public about issues surrounding tissue donation, says Dr. Ford. He and others at Hopkins hope to improve the public’s knowledge about these issues and to create programs that educate patients about their rights as research participants and contributors to scientific discovery.
Meanwhile, Hopkins is taking steps to recognize the contribution of the Lacks family and of research participants in general. In October 2010, the Johns Hopkins ICTR hosted the inaugural Henrietta Lacks Memorial Lecture, attended by some 20 members of the Lacks family and more than 600 community members and research personnel. The lecture will annually honor Henrietta Lacks and the global impact of HeLa cells, and also serve as a reminder of the gratitude, respect and clear communication due to all research participants.
The Johns Hopkins Health System has also sponsored the Henrietta Lacks East Baltimore Health Sciences Scholarship, which provides up to $10,000 a year to support promising graduates of Paul Laurence Dunbar High School. The Henrietta Lacks Award for Community-University Collaboration sponsored by the Johns Hopkins Urban Health Institute provides a $15,000 annual award to recognize outstanding, preexisting community-university collaborations in Baltimore.
In late 2010 and early 2011, the Johns Hopkins ICTR coordinated three “Microscope Days” during which 20 to 40 Lacks family members and friends visited campus to view HeLa cells under the microscope and learn more about their contributions to medicine. More such events are planned in the future, as are plaques honoring Henrietta Lacks’ contribution.
Many consider this recognition long overdue. While agreeing, others note that the woman behind the cells was not forgotten out of callousness or indifference. As the doctors who cared for her and the researchers who used her cells to transform medical research grew old and died themselves, new scientists, unaware of this remarkable woman’s role, took their place. As the years rolled on, the memory of Henrietta Lacks receded into the distant past.
Today, this woman, through whose cells many new avenues of science were born, is finally being remembered and honored by the larger community that has benefited from her contribution to medical research.