The Immorta HENRIETTA LACKS
How a poor tobacco farmer died and became a worldwide scientific superstar whose ‘HeLa’ cells sparked medical breakthroughs, a book, a new Oprah movie and a long-running debate about medical ethics
Some 66 years after her death, Henrietta Lacks lives on — daily and quite literally — atop laboratory benches at Toronto’s Mount Sinai Hospital.
Indeed, cells taken from the cervical cancer that killed her in1951are still being cultured and used by the tonnes in labs around the globe, says biochemist Jim Woodgett, director of the hospital’s Lunenfeld-Tanenbaum Research Institute.
“Oh, we use them all the time,” Woodgett says of the thriving cells — dubbed HeLa after the first two letters of their original owner’s given and last names.
HeLa cells, which have unique properties, have become a basic and ubiquitous tool of biomedical research. They’ve also inspired a bestselling book and a longrunning ethics debate, and are taking a star turn this weekend in an Oprah Winfrey movie debuting on HBO.
Without the knowledge of Lacks, a poor, African-American tobacco farmer from Virginia, cells harvested from that longago tumour biopsy began to be grown for human tissue research at Johns Hopkins Hospital, where she was being treated in the Baltimore facility’s “coloured” ward. And they just kept growing. Unlike any seen before, Lacks’s cells would divide outside the body with abandon — overspilling Petri dishes and test tubes that all previous human counterparts were hard-pressed to fill.
In medical terms, they proved “immortal,” says Woodgett, whose lab has used them to study cell division and protein function.
Lacks’s cells were famously used in the development of Dr. Jonah Salk’s polio vaccine in the early 1950s and in the creation of countless drugs and research advances worth untold billions of dollars since.
But they also entered a vortex of mounting ethics controversies and compensation claims that are explored as part of the Winfrey production, The Immortal Life of Henrietta Lacks.
The movie is based on a 2010 book of the same name by Rebecca Skloot. It also tells the story of Lacks’s life and the effect her cellular immortality had on her family and on medical research worldwide.
Her own life was short but spirited in the face of poverty, Skloot says in a phone interview.
“She grew up in the very rural South during the era of segregation,” Skloot says. “She was descended from slaves who had worked this tobacco plantation that eventually she came to own a piece of.”
Lacks had lived in one of the plantation’s former slave shacks, and she had borne five children before falling ill at age 30.
“But she loved it down there; every story about her in the (nearby) town of Clover was about how much she loved it.”
She was also loved — by her family, friends and neighbours touched by her generosity.
“She was sort of like this uber-mother,” Skloot says. “She just took care of everyone: her kids, her cousins’ kids, the neighbours’ kids. If you didn’t have a girlfriend, she’d find you one; if you didn’t have a place to stay, you slept on a mattress in her hallway.”
Her giving would extend far beyond the grave.
Lacks was first seen in1951by Johns Hopkins doctors, who would take two biopsies for diagnosis and research. About eight months later, she died. Even before her death, the cells had already spread to labs around the world.
But their human provenance had been largely forgotten.
In one of the book’s many memorable passages, a lab assistant at Lacks’s autopsy took in her painted toenails and was jarred by the sight, Skloot wrote.
“Oh jeez,” he thought, “She’s a real person.”
It dawned on him only then that the cells that had rocketed to scientific stardom had come from a “live woman,” one who bent down in a bathroom and carefully painted her nails red.
This type of human recognition by scientists — acknowledging the people who produced the clusters of cells they detachedly employ — was greatly bolstered for many researchers by Skloot’s book, says Woodgett, who also teaches a course on research ethics at the University of Toronto.
“I think the movie will do the same,” Woodgett says. “I think the scientific community should embrace this as yet another learning lesson.”
And the more that lesson is taken up, the greater the satisfaction for Skloot, who began to study the Lacks story as a graduate student in 1999.
“That was one of the biggest motivations behind telling (it) in some ways,” she says. “Putting a human face to this incredibly important advance that every single person has benefited from.”
Like most cervical cancers, Lacks’s was caused by the human papillomavirus, or HPV. HPV can spark tumour growth by invading cells on the surface of the cervix, latching onto segments of their DNA and creating cancer-causing mutations.
The genome, Skloot explains, has three billion places where the virus can potentially land.
“And by chance, the place where the HPV virus landed . . . happened to turn on the most aggressive tumour gene that it could have,” she says. “So it really was like a one-in-three-billion chance that it could have landed right there and switched her cancer on in a way that was so incredibly aggressive for her … and for science in a way that turned out to be very good.”
HeLa cells have proven an undeniable boon to medicine for more than six decades, Skloot says.
Among other things, they have been used to grow viruses for vaccine development, study cancer, AIDS and cell division and to test the effects of radiation and poisons on human tissues. They’ve even been to space, where they were used to test the effects of microgravity on human tissues.
Also among their assets, Woodgett says, is the uniform platform they provide for researchers in every corner of the globe.
The worldwide use of the cells, he says, helps ensure that experiments conducted in Tokyo or Paris can be reliably reproduced and verified in Toronto or Boston.
“Pretty much every university, ev- ery hospital research lab has these cells,” he says.
Cells, including the HeLa versions, are grown in labs using mediums rich in glucose and other nutrients that prompt them to divide.
“But normally cells will divide only a certain number of times, even under the best conditions, and then they’ll stop,” Woodgett says.
Normal cell lines will grow, in a Petri dish for example, until they are all touching and then they’ll stop, he says, a process known as “contact inhibited.” Further growth relies on splitting these up and placing the separated cells into other vessels. But even then, cells will stop growing after two or three of these separations or “passages,” Woodgett says.
“Immortalized cells will just divide and divide and divide and they don’t tend to be contact inhibited,” he says. “They’ll pile up on top of each other and they also grow indefinitely.”
For the Lacks family, which now includes great-grandchildren, there’s an ongoing pride in the lifesaving advances the cells have supported and in their reminder for scientists like Woodgett of the humanity beneath their microscopes.
“They talk about that a lot, how they feel it’s so important for scientists to really learn the story of Henrietta and her family and the impact all of this had on them,” Skloot says. “They hope that in the future other people don’t have to have the same experiences.”
For Henrietta’s husband, David, and their children, those experiences began in 1973, 22 years after her death, when researchers came Immortal Life of Henrietta Lacks. knocking to enrol them in studies. Having had no notion that their wife and mother was living on in medical fame and cellular reality, this scientific onslaught was traumatic.
Her daughter Deborah Lacks — the Winfrey character and the soul of Skloot’s book — was especially disturbed by the researchers’ arrival, thinking they’d come to tell her that she too might be dying of cancer.
“She knew her mother died around the age of 30 … and Deborah always lived in fear of her own 30th birthday (which was then approaching),” Skloot says. “So this just seemed like her worst fears coming true.”
Eventually, Deborah, who died of a heart attack in 2009, came to see the cells in a spiritual fashion, as the selfless presence in the world of a mother she’d barely known.
“She really believed that her mother was chosen as an angel, brought back to life to take care of these people,” says Skloot, who became close with the daughter over the decade she worked on the book.
“She felt that Henrietta in life was such a caretaker and such a mother to so many people and that in death she’s essentially doing the same thing — curing diseases and really taking care of people.”
Other members of the family, however, felt hurt and resentful at the absence of their consent to use the cells and over the huge amounts of money they’d generated.
Learning from journalists in the 1970s that the cells were being bought, sold and employed in medical breakthroughs, Henrietta’s sons became enraged, says Skloot, who is played in the movie by Australian actress Rose Byrne.
“They found that out and they were like, ‘Oh, wait a minute, if her cells are so important to medicine, why can’t we (afford to) go to the doctor? And if people are buying and selling them … where’s our cut?’ ”
Courts and legislators internationally have weighed in on the money issue, deciding that payments will not be owed for tissues or genetic information used in research or biotech advances.
Most of the Lacks family has come to accept this, Skloot says. Many family members have made extensive speaking appearances extolling Lacks’s legacy, and fostering pride in her contributions.
But the current generation met a new outrage in 2013 when a group of German scientists sequenced the HeLa cells’ genome and posted the results online.
It was the German work that finally revealed the genetic secrets of the cells’ immortality — raising the possibility they could be used to immortalize other cell lines.
But it also exposed genetic information about any of Lacks’s living descendants — who would share large segments of her genome but, yet again, were not informed about and gave no consent for the sequencing or its publication.
Legally, researchers didn’t have to seek consent, Skloot says. For the scientific community, however, the sequencing and posting caused an uproar.
“They were like ‘what’?” Skloot says. “Of course we were all curious about the genome, but are you kidding? You did this without talking to her family? Have you read the book?”
After consulting the family, Skloot persuaded the researchers to remove the information. And now two of Lacks’s descendants sit on a U.S. National Institutes of Health board that decides who can use her genetic information and for what purposes.
“Nothing like this ever happened where either research participants or tissue donors are part of the process,” Skloot says. The family “wanted this genome to help the world, but also basically wanted this whole (lack of consent) process to stop with this generation.”
Still, other legal and ethical issues raised by Lacks’s case remain sticking points.
Key among these, says clinical ethicist Michael Szego, is informed consent: the right of a patient to explicitly approve involvement in medical trials or the laboratory use of tissues or other clinical information with a clear understanding of the research involved.
The notion of consent, however, was largely absent at the time of Lacks’s treatments, Skloot says.
“They went in and they took these samples and it was totally standard at the time,” she says. “They were taking samples from really anybody they could get their hands on.
“We didn’t even have the term ‘informed consent.’ ”
Today that has partly changed under rules observed in most advanced medical systems, says Szego, acting director of the Centre for Clinical Ethics, a joint venture of St. Michael’s Hospital, St. Joseph’s Health Centre and Providence Healthcare.
“If Henrietta Lacks were to walk into Johns Hopkins today and get her cervical cancer biopsied (for research) . . . they would need to get her consent prior to doing that.”
And Woodgett notes that patients would often need to give further consent before their tissues were used in new and different research.
As well, Szego says, no tissues of genetic anomalies used in research today can be labelled with identifying information.
Yet even today, consent is strictly required only for tissues explicitly obtained for medical research, Szego says.
Cells or other materials taken during routine treatments — an artery snipped out during heart surgery for example — are considered medical waste and can be used in labs without the approval of patients from whom they’re taken, he says.
“She really believed that her mother was chosen as an angel, brought back to life to take care of these people.” REBECCA SKLOOT AUTHOR OF THE IMMORTAL LIFE OF HENRIETTA LACKS, ON LACKS’S DAUGHTER DEBORAH, PLAYED BY OPRAH WINFREY IN THE MOVIE
So does the movie do justice to Lacks’s story and the medical and ethical complexities it has raised?
Like many authors whose books have been brought to the screen, Skloot is somewhat ambivalent about the Winfrey movie.
“I had 400 pages to tell the story so I got to say everything I wanted to say about Henrietta, about the science, about just everything,” she says.
Much of this rich detail was jettisoned for the 95-minute movie. “As a writer I want every single fact in a movie,” Skloot says. But on balance, she believes Deborah Lacks would have approved.
“Of course there are some things in it that are fictionalized,” she says.
“But I think . . . in essence it really captures Deborah’s desires and her quest and her journey in a way that I think she would be happy with.”