Science writer Rebecca Skloot

Science writer describes the backstory of her book The Immortal Life of Henrietta Lacks and discusses lessons learned from her research for it.

Science writer Rebecca Skloot's work covers a wide range of topics, including race and medicine and bioethics, and has appeared in numerous publications. She is a contributing editor at Popular Science and has taught in NYU's graduate Science, Health and Environmental Reporting Program. In her debut book, the critically acclaimed The Immortal Life of Henrietta Lacks—which took more than a decade to research and write—Skloot tells the story of how cancer cells taken from a poor Southern tobacco farmer became one of medicine's most important tools.

TRANSCRIPT

Tavis: Rebecca Skloot is an award-winning science writer and the author of one of the most acclaimed books of this year. The book is called The Immortal Life of Henrietta Lacks. Rebecca, good to have you on this program.
Rebecca Skloot: It’s great to be here.
Tavis: I travel a lot and I’m always a pretty observant person. I have noticed on airplanes, on trains, in waiting rooms, I have seen so many people reading this book.
The first thing that really got my attention about it was I noticed a lot of Black women in my world, Black women who I come in contact with, reading this book and that’s what originally got my attention about it. So I started looking into it myself. What is this story about him – I mean, I’d heard the name before, but didn’t know the story myself.
So I knew that we had to talk because I see so many people connecting with what’s in this book and that’s important for me because so often we see the numbers that indicate that Black women specifically fall behind in healthcare, in health treatment, etc.
When I finally got a chance to get the book, having said all that, it’s rare that I see a book where the cover really does tell you what the story is. They did a great design on this cover.
Jonathan, put this cover up because I want to read from it. This pretty much tells the story. The Immortal Life of Henrietta Lacks: Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multimillion dollar industry. More than twenty years later, her children found out. Their lives would never be the same.
Now if that doesn’t make you want to read this book (laughter), I don’t know what does. Tell me more, though, about Henrietta Lacks.
Skloot: Henrietta Lacks was a poor African American tobacco farmer. She grew up in Southern Virginia and, at the age of 30, she got cervical cancer and went to Johns Hopkins. She was living in Baltimore at that point. Before treating her cancer, without her knowledge, her doctor just cut a little piece of her tumor and put it in a dish and he sent that down the hall to George Gey who was the head of tissue culture research at Hopkins.
George Gey had been trying to grow human cells for decades and it had never worked. No one knows exactly why, but her cells just never died, so they’ve been growing in laboratories around the world for almost 60 years. They were one of the most important things that happened in medicine. She died about six months after they took the sample never knowing that the cells had been grown.
Tavis: So the growing of these cells for all these years has meant what to cancer research, has meant what to the industry?
Skloot: The list is sort of amazing and goes on and on. They were the first cancer cells ever grown outside the body, so they could use them to study just what cancer was, how do they divide differently than normal cells, how do they spread.
But they were also used to develop the polio vaccine. They went up in the first space missions to see what would happen to human cells in zero gravity. Her cells were the first ever cloned. Her genes were some of the first ever mapped.
Some of our most important cancer medications like Vincristine and Tamoxifen can be traced back to her cells. The HPI vaccine, I mean, the list just goes on and on, so much of our most important research.
Tavis: How legally is that allowed to happen where they can take something out of your body and, as the book cover suggests, a multimillion dollar industry is born as a result of it and you or your family see none of that?
Skloot: Well, it depends on the time period. When this happened in the 1950s, we didn’t even have the concept of informed consent that we have now. The term wasn’t even really around. This was something that they were doing to people all over the world.
I mean, they were taking samples from anyone who came into the hospital, so it was really standard practice. They had no idea in the 1950s that they could someday look inside those cells and learn about her family or that they would ever be worth money. So initially George Gey just gave them all away for free. It was later they become commercialized.
But then today, I mean, there’s still a lot of issues related to that. It’s now illegal for a researcher to just take a sample for research without telling you. But the samples we leave behind in the hospital, you know, from biopsies, blood tests, various things like that, you know, we sign these forms that say you can dispose of my tissues any way you see it.
You can use them in research and, as long as your name isn’t attached to them and the researcher didn’t have contact with you, they go in these bio banks and they can be used in research and it doesn’t require permission to this day.
Tavis: So when we go in – I was in for a surgery a few months ago, minor surgery, you know, outpatient. But when you go in for surgery, the forms that I was signing, that you sign, that we all sign, and they give you a mountain of these things and nobody – well, I know some people who are really, really anal, I guess more anal than I am.
But I try to read it as fast as I can, sign it, read it real fast, sign it. Are you suggesting to me now that we’re signing stuff away when we go into the hospital that we’re not really attuned to?
Skloot: Yeah. People often don’t really read the forms, so often there is a line in there that says something about it. There’s a lot of debate about what those forms should say. I mean, it ranges from hospital to hospital.
You may go to one place and it just says you can do whatever you want with my tissues, period. You may go to another hospital and they’ll give you a book that says this is what tissue research is, this is what we do with it. There’s no sort of federal guidelines that say all hospitals have to do this.
Tavis: No uniformity, yeah.
Skloot: Right. So it’s sort of up to the place. A lot of people don’t read them and, even if they do, it doesn’t have enough information really in those forms usually for you to know what it means.
People don’t read them for a lot of reasons. I mean, they’re in the hospital, they’re sort of scared, they’re going for a procedure. They think, well, what am I going to do? Then they’re not going to do the surgery. There are a lot of big issues about how to deal with that.
Tavis: Yeah. Well, there’s a depressing story in the book about how her own, Henrietta Lacks, her own family members years later found themselves in need of and without healthcare, never mind all the millions that had been made and generated in this industry because of their ancestor’s cells. Tell me more.
Skloot: Yeah, that’s one of the hardest things about the story for the family. A lot of them can’t afford health insurance and they often say, “If our mother was so important to medicine, why can’t we go to the doctor and get access to some of the care that her cells helped create?”
And the money as well. You know, you can go online and buy a vial of HeLa cells for about $200 or products made using the cells that -
Tavis: - when you say HeLa cells, that deserves an explanation. They’re called HeLa cells.
Skloot: Right. They’re called HeLa, which is an abbreviation, H-e for Henrietta and L-a for Lacks. So the name of the cells is her initials, so they’re called HeLa. Anyone can buy them. For about $200, you can get a vial and you can get products made using the cells up to about $10,000 a vial. You know, for the family who’s still struggling, they look at that and say, well, shouldn’t some of that come to her family?
Historically, sort of, you know, legally and case law wise, that’s never been the case. There have been points in time where people have sued for property rights in their tissues and the courts have ruled against them saying once you leave your tissues in a hospital, you don’t have any property rights in them.
Tavis: There is no adjudicating body, there is no governing board, there is no advisory panel of anybody who could say to the industry, given what we have done and made off of Henrietta Lacks, we have decided that we’re going to do this for her family. That would never happen today?
Skloot: Yeah. There isn’t really just like one big body that looks over all of it. Each institution has their own, you know, review boards that look at the different research and that sort of thing. There’s concern within the scientific research community and a lot of these institutions that says, well, if we give the Lacks family money, it would set a precedent and what about all the millions of other people whose cells we’ve used in research?
Some of that has been commercialized. Those people often didn’t know. We don’t even know who a lot of those people are or who made the money. It’s this really complicated sort of sticky issue for science and no one has sort of figured out how to deal with that yet.
For the Lacks family, one of the things about their story is that the money is just one little part of the story for them. It often gets sucked up into that issue of who should be profiting, but there are a lot of other issues. Her family was used in research without their consent.
In the 1970s, they didn’t know that these cells had been grown in the first place. She had five kids when she died and she died in 1951 and, in the early 1970s to learn more about the cells, since scientists decided to track down her kids and do research on them, her husband had a third grade education.
He didn’t know what a cell was and he got this phone call one day and the way he understood it was essentially we’ve got your wife and she is alive in a laboratory or part of her is alive in a laboratory and we’ve been doing research on her for the last 25 years and now we have to test your kids to see if they have cancer.
Tavis: And that’s how they found out 20-plus years later that these cells were still living.
Skloot: Right. They thought that they – her children were all around the age of 30 when it happened, so they all thought that they were going to die and that they were getting some kind of treatment which they weren’t and the scientists never stopped to explain to the family what was going on. It started literally just sort of decades of scientists coming to the family wanting things and various sort of problems for the family.
You know, at one point, Henrietta’s medical records were released and published in the press. So there are a lot of these big sort of ethical issues that sort of happened to the family, but when researchers and institutions talk about doing anything for the family, it always comes back to this question of money and the other stuff gets sort of put to the side.
Tavis: Henrietta Lacks was an African American woman, Negro woman, Black woman. Without coloring the question deliberately, what ought we take from that? What does that mean?
Skloot: Well, you know, her story is part of a long history of, you know, research on African Americans without their consent. In this case, they were doing this to patients, Black, white, anyone really, but it carries a lot of weight in the African American communities because there is this really long painful history and there’s a lot of mistrust between African Americans and scientific research. This story has long sort of fed into that.
Tavis: So what’s the timeframe of this as compared to the Tuskegee study?
Skloot: Same time.
Tavis: Same timeframe, yeah.
Skloot: You know, it was toward the end of it. The Tuskegee studies started much earlier. But one of the things that really sort of tied the two stories together was that, when her family found out about the cells being alive in the 1970s, it was literally a few months after the news hit the press that the Tuskegee studies had happened.
Tavis: We should explain what that is. I jumped in there because I know it so well.
Skloot: Yeah. The Tuskegee studies are sort of held up as one of the most famous unethical research studies done in the United States where hundreds of African American men with syphilis were essentially studied to watch to see how syphilis killed from infection to death and, when treatment became available for syphilis, they didn’t offer it to these men, so they really just watched them die without treating them.
That study and a lot of other similar ones done all the way back to the slavery era, you know, caused a lot of mistrust in African American communities. But no one knew that the Tuskegee studies had happened until the 1970s. It hit the press and then Henrietta’s cells being alive hit the press, so people wondered did they not treat her cancer so that the cells would grow? Was this another Tuskegee? That added to the fear and sort of reaction to the story.
Tavis: Give me a couple of abiding lessons that we ought to take from The Immortal Life of Henrietta Lacks.
Skloot: You know, science now and even more so in the future relies so much on these biological samples. Our future medications and vaccines and everything depends on these things. There is a human being behind every one of them, but scientists often are not trained to think like that.
So I think one of the lessons of the book is that it’s just that there are people behind these things and they often do actually care what happens to their samples.
Most people would be fine having their tissues used in research and the Lacks family often says, you know, if they had asked us, we probably would have said yes. But, you know, it’s when you find out after the fact is when a lot of the damage comes in, so there’s that.
So I really wanted it to also be the story of the humans behind the scientists. You know, the scientists involved in this story have been held up as racist scientists who stole this woman’s cells, maybe knew that they were valid, maybe gave her cancer and none of that is true either. So I really wanted to tell both sides of the story.
But I think in a lot of ways, one of the biggest lessons of the book is the importance of scientists being able to communicate science to the general public. You know, if someone had taken the time to really explain to the Lacks family what a cell was and what they were wanting to do with her children in the 1970s, so much of the trauma that followed for her family wouldn’t have happened.
Tavis: I think it’s called ethics (laughter).
Skloot: Right, and compassion and communication. You know, the scientists there aren’t always the best at explaining the research that they do and sometimes they need a little help doing it, but there are ways to get it done.
Tavis: You’ve helped them out and, for that matter, helped a lot of us out with the new book called The Immortal Life of Henrietta Lacks written by Rebecca Skloot. Rebecca, good to have you on the program and thank you for the test.

Skloot: Thank you.

Last modified: April 26, 2011 at 12:28 pm