Photograph from Science Source
Rebecca Skloot. Photograph by Andrew Cutraro, Redux
Published August 16, 2013
In the photo, she stands with a determined yet friendly expression on her face, hands on her hips, as if she's ready to face the future, no matter what it might bring. She is Henrietta Lacks, and she could never have imagined what the future would hold.
An aggressive strain of cervical cancer took her life in 1951, when she was only 31. But cells harvested from her tumor, without her consent, have lived on ... and on and on.
The best-selling book The Immortal Life of Henrietta Lacks, which features the striking image of Lacks on its cover, tells the story of this African-American woman, her family, and her fast-growing cells, used in over 70,000 medical studies.
"HeLa cells," as they are called, have made vital contributions to the development of drugs for herpes, leukemia, influenza, and Parkinson's disease. The cells have been used in studies on everything from lactose digestion to mosquito mating. "The cells reproduced an entire generation every twenty-four hours, and they never stopped," writes author Rebecca Skloot. Today there are millions, perhaps even billions, of her cells "in small vials on ice."
The latest development in the story: Earlier this year, scientists sequenced Henrietta Lacks's genome and made it public, without asking the family's permission. That is clearly a violation of privacy. But now the National Institutes of Health has taken the important step of inviting two of Lacks's descendants to be part of the HeLa Genome Data Access working group, which considers applications to use the genome. We spoke with Skloot for her perspective on this latest turn in the Lacks saga.
When you wrote the book, could you ever have imagined this latest turn of events: a medical institution inviting the Lacks family to join them in future deliberations?
In my wildest dreams, what I hoped would happen [is that the book would] lead to a big national discussion that would result in scientists and the Lacks family being in the room together talking and making some kinds of decisions about policy. It's an incredible thing to see.
What does this mean to the family?
It's a recognition of what they've been through. Also for them there are some pretty real implications and concerns about questions of privacy. No one ever asked if genes from their family could be released to the public. Beyond that their family has never had a voice in anything having to do with HeLa cells.
Is this a case of racism?
In the '50s it was not like they were targeting [Henrietta Lacks] because of her race. They took samples from anyone they could, including their own families.
In the 1970s, when scientists went back to her children to do research on them-—that's the moment I think race played a significant role. The scientists grew up in an era of segregation, of not having to ever explain things to black people. Laws had changed, segregation was gone, but people hadn't necessarily changed. I think had they been a white family they would have been treated differently.
If any scientists in the '70s had taken time to just say, "Do you have any questions?" they would have realized that the Lacks family didn't know the cells were being used in research, didn't know what a cell was. They thought some part of Henrietta was alive. All this would have come up if someone had just said: "Does anyone have any questions?"
Image by Gopal Murti, Visuals Unlimited
How has the family reacted to this NIH invitation?
I was listening in on all of these meetings on speaker phone. It was a very positive attitude. People wondered, did the family go in there demanding money? They didn't. They went in there wanting to help science but [to make sure their] privacy is protected.
The NIH folks went in there with the exact same motivation. It was a beautiful thing to listen to, both sides taking each other absolutely seriously, open to each other's questions and thoughts. [The family is] very happy that they're finally being given a seat at the table of science. One of the family members took a selfie with his cell phone and it's a very joyous picture—it captures the way everyone was feeling at that moment.
If you were to write a new last chapter for the book, what would you say?
There's a chapter in the book called "Nothing to Be Scared About." In that chapter there's the story of Deborah [Henrietta's fourth child, who died in 2009] having come to this place where she felt like she did understand so much more about the HeLa cells that she let go of some of her fears surrounding it.
At the end [of the chapter] there's a baptism in the church and it's one of Henrietta's great-granddaughters. Deborah's husband, James, the reverend, was doing the baptism, and he picked the child up in the air and held her and said, "This child will someday know that her great-grandmother Henrietta helped the world!" And he pointed to the cousins and said, "This is their story now. They need to take hold of it and let it teach them they can change the world too."
And now the next generation is doing precisely that. Nothing would have made Deborah happier. This is the third generation saying, "This stops with us. From here on, we will be involved." It is the first generation of college-educated Lacks. They grew up knowing about the HeLa cells in a way no previous generation has. And what they're doing is amazing—and will impact how other people's tissues are used in research. They spend a lot of time doing public speaking at universities and medical schools, talking about their story and teaching future generations of doctors and scientists about it. And who is better qualified to talk to scientists and the public about how scientists and the public should communicate?
So to me the next chapter is Deborah's dream come true, [the new generation] moving into the future precisely the way that the older generation had hoped they would.
How do scientists feel about the family's involvement?
The one thing that's important to say is that a lot of scientists are worried that bringing the family into this is going to somehow slow science down and set a precedent for involving the public in research. I think this is a pretty hopeful moment in terms of science moving forward. The Lacks family had every reason not to want to help and say, "Leave us alone." But they came into that room and said, "We want science to keep going, and we want to help."
The division between science and the public has broken down in the last several years more than ever before, but science and the public have always lived in these very separate spheres, and neither one of them knew how to talk to each other.
Science relies on the public more and more for samples. And for the first time, you can go on Twitter and find a scientist you read about in an article and ask a question and get an answer. It's an exciting time, when scientists are more accessible to the public than ever before. A lot of good things can come if science and the public find a way to move forward in a positive direction.
Have we ever discovered why her cells thrived—and continue to thrive?
That's one of the most frequently asked questions I get. The answer has always been we don't really know. We knew that HPV caused her cancer, [and] we knew she had syphilis, which might have weakened her immune system and made her cancer grow more rapidly. But a lot of people had HPV, and their cancer didn't grow more rapidly.
A new paper published in Nature found why her cancer was so aggressive. The HPV virus happened to land on this one location in her genome that's right near this tumor gene that is the most volatile gene involving cancer we know of. When that gene gets turned on, it causes incredibly aggressive cancers, so the theory is this is what made her cancer so aggressive and what made the cells grow so quickly in culture. It was just utter chance; the odds of that happening were so incredibly slim. But for Deborah, she would say this is all not chance, not coincidence.
If Henrietta did not go to the doctors we would not have some of the medicine we have today...I give GREAT THANKS to Henrietta and of course her loving, helpful family.
I'm sure Ms. Lacks was a nice person, but the accolades bestowed upon her are, quite frankly, pathetic and insulting. She did nothing to advance medical science except provide tissue. She was not a "cancer pioneer." Essentially, she was akin to a lab rat.
Has anyone consider the bioethical question of whether or not laboratories who continue to use the HeLa cells without authorization from the family are violating current ethical standards. Situations like this and the Tuskegee Experiment alienates the African-American Community and prevents its participation in medical research, which in turns helps to exacerbate health disparities in the same said community. This is a travesty of bioethics that is justified by the extraordinary scientific achievements using the HeLa cells. This is blatant unadulterated bioethical racism that allows many to profit from exploitation, while the family is not compensated for the unauthorized use of a family member's cells.
No, Tea, HeLa cells are NOT hybrid DNA. They are HER cells, still alive after all these decades in thousands of incubators across the world. HER cells, unchanged, unaltered, still growing unchecked. She was the very first (unaware) donor whose cells could survive outside the body. The breakthroughs that her very awful cancer provided to us are immeasurable. We all need to recognize the potential and risks of our own cells. Did you know, for example, if a hospital takes a biopsy of you the tissue is deemed "abandoned" and your cells can be grown, sold, made into therapies.
Hybrid DNA is not the same person. Moreso, not even human.
Not even the same species. So, I don't see a problem.
ps. The comment registration method is a problem. That should be clearly obvious from the number of comments here.
Nothing like the Tuskegee experiment at all. She was treated for her condition and the doctors were able to uses cells obtained from her cancer. No racism, no exploitation. Celebrate African-Americans who made real contributions to medicine like Dr. Ben Carson, not someone who was a mere tissue donor like Ms. Lacks.
I don't think that there is a problem with the registration method. It took me very little effort to get registered. Most reliable sites require registration for comments, especially if they are trying to decrease trolls.
Also, HeLa cells are HER cells that have had a single mutation that caused them to be cancerous. This does not make them "not even human." The fact that you would think so shows how little you know. If in fact they were no longer human, then all of the research that has been done ON HUMAN CELLS would be invalid, because they used HeLa cells. HeLa cells were the FIRST HUMAN CELLS to survive in culture, which is the reason they have been using these cells for decades.
@Tea Ice Are you sure that the comment method is the problem? I am going to see how difficult it is.
@Tea Ice You could not be more mistaken. They are HER cells. Not a piece of DNA but HER live, growing cells.
@James B @Jonathan Smith In order to be a donor you must consent to the use of your tissue. The law in the 50's was clear that while a person was alive then no permission was needed. Dr. Gey took more samples from her after her death at a point in which he needed permission from her husband. Her husband never consented and the doctor took her tissue anyway. While I believe his actions were unethical, I can still appreciate the contributions that the cells of Henrietta Lack have made to science and medicine.
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