Johns Hopkins University in Baltimore, Maryland, announced plans to name a new research building after Henrietta Lacks, a former patient of the university hospital who’s become known for her “immortal cells.” Henrietta Lacks was an African-American woman. She permanently changed modern medicine nearly 70 years ago, when it was discovered her cells could live forever. These “immortal cells” have helped scientists produce remedies for numerous diseases, including the first polio vaccine, that have saved hundreds of thousands of lives.
ohns Hopkins says the new Henrietta Lacks campus building will feature courses and activities that promote research ethics and community engagement.
Some members of Lacks’ family, however, have criticized Johns Hopkins’ use of Lacks’ cells, raising questions about privacy and patient rights, as well as whether the family should receive compensation for their use. Researchers at Hopkins took Lacks’ cells without her consent when she was a patient there in 1951. She died of cervical cancer the same year. But her cells were soon being duplicated in labs across the globe. For decades, the woman whose cells would save countless lives was not known by name. Instead, she was just known as—her cells were just known as “HeLa” cells, the first two letters of Henrietta Lacks’ first and last name. Even her family had no clue about her legacy until more than 20 years after her death. Henrietta Lacks’s cells are to the contribution of science, a contribution she did not know she was making at the time.
Rebecca Skloot talking:
there isn’t a person out there who hasn’t benefited in numerous ways from the cells. You know, the vaccines that we all get were developed using her cells. They were the first—her genes were some of the first ever sequenced. They went up into space to see what would happen to human cells in zero gravity. In vitro fertilization was developed with the help of her cells. I mean, just the list goes on and on and on.
these are her cancer cells. And she had an incredibly aggressive cancer that grew sort of unlike many cancers. It went from a tiny tumor on her cervix to, just within a few months, there were just tumors covering every organ in her body. And part of what is amazing about her cells is that they were first, but also they grow with this intensity that really was never seen in labs and kind of hasn’t been seen since.
Johns Hopkins didn’t realize anything. I mean, she just happened to walk into Hopkins in the ’50s at a time when scientists all around the world were trying to grow human cells outside the body, and it had never worked. And so, at Hopkins, there was one of the leading tissue culture researchers who was kind of at the head of this field, and he was taking samples from anyone he could get his hands on—any patients who walked into the hospital, himself, his kids, his friends—and basically was just trying to grow any cells he could. And so it really was this kind of chance confluence of events that Henrietta, with this incredible cancer, arrived at the location where this man had been trying to do this for so long. So it wasn’t that they targeted her, that they said, “Oh, her cells are interesting.” She just went in for a routine biopsy of her tumor, and they just took an extra little piece and put that in a dish, and that’s what became the cell line, and that she never knew about.
they didn’t know these were going to be valuable. So, at the time, we didn’t know anything about cells. There were just trying to cure cancer. They were like, “If we can grow cancer cells outside the body, maybe we can figure out why it’s so powerful.” They had no concept. There was no industry connected to any of this, or biology, really, in general. They hadn’t—DNA hadn’t been discovered yet, so they couldn’t know that someday they’d be able to look in these cells and learn about her family. So, it’s important to look at this story within the context of history, in that way, that they really had no idea what they were potentially discovering or that there was potentially any gain in it.
And they didn’t have any sense that they wanted anything from her family until 25 years later, in the ’70s. And at that point, you know, genome sequencing was starting. And what they wanted to do was look at some of her family members’ cells and their genes. And it was in order to learn more about the cells. There was no financial interest at that point. There wasn’t someone saying, “Oh, we can make a bunch of money if we take samples from her family.” It wasn’t that at all. But they went back to her kids at that point, because there were things they needed to know about HeLa cells that they wanted to be able to learn about her genes in order to do that.
there were sort of several big ethical moments in the story. And the first is, in the ’50s, they took these samples without her knowledge. You know, should we do that? Should we not? That was the ’50s. And then, in the ’70s, when they went back to her family, it was—it raises these other questions about what should—you know, should people have to be told when they’re—kind of researchers are going back to them and asking for more samples? And in the ’50s, we didn’t have any practice related to that. There were no laws saying they needed to ask. It wasn’t standard procedure. But in the ’70s, it was. The law had actually been written saying you have to ask in a situation like this, but hadn’t been codified into law. But at the time, any—most people would have asked, and they didn’t.
The family thought that they were being tested to see if they had the same cancer that Henrietta had, which wasn’t the case. So they actually thought they were receiving medical care, when in fact they were being used in research, and there was no personal gain to them at all. And Deborah, her daughter, asked a lot of questions in that moment about what was going on, and just nobody explained it to her. And, to me, that’s really the heart of the ethical story, is that moment, when her family got drawn into research without their knowledge, without their consent. And then, you know, this continued to happen over the generations after that.
– the scientists sequence the HeLa genome, post it online.
In 2013, so three years after the book came out, a group of scientists sequenced the HeLa genome, which had a lot of value for science, because you can learn a lot about the cells that way. But the cells also contained Henrietta’s personal genes. And yeah, they posted this online. And, you know, these days, people take swabs of your cheek cells and send it to companies like 23andMe, and you get this report that says everything from, you know, you may get early-onset Alzheimer’s to, you know, you have male pattern baldness genes or whatever. And, you know, people often go to genetic counseling to decide if they want that information. They certainly don’t usually publish it online or have that happen without their knowledge. And that was what happened with these in this moment, was that the genome was sequenced, posted online, where anyone could download it, and you learn a lot about Henrietta, her kids, her grandkids from that. And so, it was a big moment.
And also, there were no laws saying that that couldn’t happen. And, in fact, there had just been a commission. Obama had just had his bioethics commission look at the question of whether we were in danger, sort of the way that the regulations were now, of this being able to happen to people. And it was just a couple months later it happened to the Lacks family, which is sort of what happens with bioethical questions. If it’s going to apply to you or to me or anyone watching this show, related to your cells, your genes, privacy, it’s probably going to happen to them first. And that’s one of the things that the family, in that moment, once they found out it had happened, they said, “OK, this is enough. We want to be part of this from here on out. We don’t want future generations to be—to have this happen to them again.” And sort of a long story short, they ended up taking the sequence offline, and the NIH ended up creating essentially a committee, with a few members of the Lacks family and some scientists, where now if you want to do research using the genome of the HeLa cells—not the cells themselves, just the genes—you have to put in an application. And it’s actually reviewed by a few members of the Lacks family to see it they feel like it’s warranted.
Jeri Lacks Whye talking:
It was when the book actually came out. That’s when I found out a lot of information about my grandmother, about her tremendous contributions to science. We knew, when we were growing up. that she helped with the polio vaccine. We knew that she died from cancer, but we just didn’t know what type of cancer she died from. So, when the book came out, it gave us so much information that we didn’t know, that our parents didn’t know. So it was like a generational thing, where one generation didn’t know, so they couldn’t tell the next generation. So now the grandchildren know. Henrietta’s children know. So we make sure that our children know, so we can carry on, so they can carry the legacy and bring awareness to Henrietta’s tremendous and huge contributions to science.
we had a discussion last year about naming a building after Henrietta Lacks. You know, some family members agreed, and some family members didn’t agree about naming a building. And that’s expected. We have a large family. A lot of people are opinionated. So, we was grateful that they actually moved forward with naming the building. And it was just amazing, because I know at one point last year when we was talking about, you know, what we wanted Johns Hopkins to do to honor our grandmother, one of the family members said, “OK, well, maybe they should name a wing after Henrietta Lacks, or maybe they should put a bench near Johns Hopkins with her name or name a Henrietta Lacks reading room inside of Johns Hopkins.” But when they came to us and said, “OK, well, we’re going to name a building, an entire building, after your grandmother,” you know, we was excited and grateful that actually Johns Hopkins is honoring our grandmother in such a fulfilling and tremendous way.
It’s two family members that’s—well, actually three. In the beginning, it was just two, but then they added another family member to serve on the committee. And what we do is just review applications from researchers just to make sure that they meet the criterias that has been formulated, to make sure that they meet what is required of them and just—I mean, it has been exciting just to actually look at—even though I’m not a sciency type of person, but just to look at what researchers are using the HeLa cells for and what they’re hoping to accomplish. And, I mean, I just look at it. It’s like these really big words, so I have to google some of the words to kind of get an understanding. But the main part is that the family is directly involved. We’re not the last to know; you know, we’re the first to know. So I think that gives us an advantage in taking control of our grandmother’s data.
No compensation. No monetary. We wasn’t asking.
I think the HBO film did a very good job. It definitely got the story out there for people who are nonreaders or people that don’t like reading a lot. They portrayed my—some family members very well. And the only thing I kind of like—OK, I’ll—some of the dialogue, it was like a little country, but other than that, I mean, everyone portrayed each family member very well. I think they did a very nice job in doing the story. I wish it was a little longer, like a miniseries or they could have did a two-part. But in all, it was a great movie. I think it was a great movie. And, you know, so many people just come up to us and just say, “We’re happy and glad that this movie has been done. We’re happy and glad that the book has been written,” because so many people don’t know her story, don’t even know her story.
– “One scientist estimates that if you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—an inconceivable number, given that an individual cell weighs almost nothing. Another scientist calculated that if you could lay all HeLa cells ever grown end-to-end, they’d wrap around the Earth at least three times, spanning more than 350 million feet. In her prime, Henrietta herself stood only a bit over five feet tall.”
Words can’t describe how proud I am of my grandmother. I mean, just knowing her story and what she has done, not just for a certain group or—she just did so much for the world, and I’m just so proud that I had the chance or I’m getting the chance to know my grandmother, to know her contributions and to actually go out and advocate and bring awareness to her story.
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Rebecca Skloot
author of the best-selling book The Immortal Life of Henrietta Lacks.
Jeri Lacks Whye
granddaughter of Henrietta Lacks.
— source democracynow.org | Oct 12, 2018