Tavis: Rebecca Skloot is an award-winning science writer whose first-ever book has become a literary phenomenon. The book is called “The Immortal Life of Henrietta Lacks: The Story of a Poor Black Woman Whose Cancerous Cells Were Used for Science without Her Permission.” It is now finally out in paperback and as I mentioned being turned into a film project produced by Oprah Winfrey.
Early on in the process, Rebecca set up a foundation to help surviving family members and others. Rebecca, good to have you back on this program a year later.
Rebecca Skloot: It’s great to be back.
Tavis: When I saw you last I had no idea that this book would still be on “The New York Times” best-seller list, and the thing that I find interesting about that is that I and others had read parts of this story. It’s been published and written about in other places. So set your modesty aside for a second – what is it about this treatment, this telling of the story that got everybody to talk about Henrietta Lacks?
Skloot: I think that the story had been told over and over in little magazine articles and newspaper articles, and it was always the same little nugget of the story – this one woman’s cells taken without her knowledge, became this important thing in medicine. Nobody really saw much; what the story’s about is her family. That moment in history, it’s ethically complicated, but it was really common to take cells without people’s knowledge in the ’50s.
But what happened to her family later, researchers went back to them 25 years after her death and used her kids in research without consent, their medical records were released to the press and published. Like, so much of what happened to her kids is really the heart of the story, and that had never been part of what was out there. So it was just this little, tiny nugget of the story that was told over and over.
Tavis: Since you raised the family, how are they reacting to this newfound fame, if not fortune, certainly, but certainly fame about this particular story and their family?
Skloot: I think there’s a lot of mixed emotions that probably come along with it for them. On the one hand, they’re really proud of the cells. I think the younger generations of the Lacks family now know what the cells did for science, and they first learned about this stuff and they were like, Henrietta is a rock star. She did all this incredible stuff for science.
But at the same time, her kids are still struggling, they still can’t afford healthcare, they’re still feeling like they’re waiting for some money to come their way as a result of some of what’s happened to them. So they have mixed emotions about the cells, but then I think the response to the book has been good for them in some ways.
They’ve been living with this their entire lives and nobody ever really seemed to care what they were going through. So I think there was a side of them that didn’t even necessarily think people were going to read it or care, and then the book came out and at a certain point the younger generation started it see it in blogs and on Twitter, and they were like, people are reading it.
The response was people coming forward and saying we’re sorry that you went through this, and thank you for what your mother did and what you went through and we wish it had been different for you, and they’ve just had this outpouring of sympathy and response and thanks. When you mentioned the foundation – readers donate every day to the foundation.
Tavis: What is the foundation set up to do, specifically?
Skloot: Well, it’s set up – the mission of the foundation is to help people who are in financial need who are used in research without their consent. So the Lacks family, all of Henrietta’s descendents qualify for that. Also the descendents of, for example, the Tuskegee syphilis studies, the famous studies where African American men were used in research without consent. There are a lot of people who potentially qualify.
So far we’ve given out eight grants for education and books to her grandkids and great-grandkids. We’ve helped some of Henrietta’s kids with healthcare and various dental procedures and things like that. I think that’s come from, in part, proceeds from the book, but also just donations from individual readers who they send the most incredible letters when they donate, and sometimes people will send a dollar and say, “This is all I’ve got, but I really want to say thank you.” I think the family is really moved by that.
Tavis: I was wondering, so I get a chance to ask you, I put at the top of this list, my list, incredulity, but if there’s something more than people being incredulous that something like – finding it incredulous that something like this can happen, if there’s something beyond that that has surprised you the most on the tour for the last year, tell me what it is. What are people saying to you when they see you in person at these signings?
Skloot: There are so many things that people come to the signings with, and I think one of the most important things that I hear is from scientists, physicians, who stand up in the audience and say thank you for bringing this out there. We didn’t realize that this had happened and we think this is an important part of the discussion about how to do research.
Also that we hope that this will help bridge the trust gap between us and particularly African Americans, but minorities across the board. So I hear that from scientists a lot, but the thing that for me is the most moving are the people who come to the events and just say, “I’m alive because of Henrietta Lacks. My cancer was treated with a drug made using her cells,” or “I was conceived because my parents used in-vitro fertilization.”
There’s not a single person out there who hasn’t benefitted personally from these cells, whether it’s because you got a vaccine or took a drug or any number of things. Watching the world realize that – you read the book and it’s this amazing, sort of fascinating story of the cells and the woman, and then at a certain point everyone hits somewhere in the book where they go, “That actually is me.”
Tavis: They situate themselves in the story.
Skloot: I think that’s one of the most incredible things to me, is to watch everyone’s individual moments where they step forward and say how they personally benefitted.
Tavis: To your point now that every one of us in some way or another, whether we know it or not, has benefited from her cells and the research done on them, does that mean that the pharmaceutical companies are flooding the foundation with grants?
Skloot: No, they are not – not yet. So far all the grants have been from readers of the book or individual scientists who will often come forward and say, “I use the cells in my research, I want to donate.” But no institutions, no research organizations, and there’s a concern from them that they don’t want to set a precedent.
They say, “If we give money to this foundation,” which they see as giving money to the family, though it’s not just giving money to the family, that they’re worried about well, if we do that, what about the millions of other people whose cells were used in research, and who gives them money and how much?
Tavis: Is it really precedent or is it guilt?
Skloot: I think there’s a concern – what they’re worried about is a precedent or potentially also an admission of guilt, yeah, that if they do this, it will be perceived as them saying that they did something wrong.
My hope was that because the foundation is about much more than just this family, it’s about people who have been used in research without consent, which has happened throughout time, that that would help take away some of that concern, but so far it hasn’t. Really, I’m just – I think that there is a company out there that’s going to be the first and then others will follow. I hear from companies that say they’re interested and they think it’s great, but they’re scared to be the first.
Tavis: Is there a basis, is there a legal claim, or has Congress already moved to cut that off, to thwart that, because they were lobbied by these industries to cut this off some time ago? Is there a legal claim that would allow persons who have had their cells or family cells used in this way without their knowledge, is there a way to bring a claim or a case against these institutions?
Skloot: Not really. There have been a lot of cases over the years; people who have found out their cells were used for some research or another without their consent. Usually the cases have to do with money. Once people find out that there’s commercialization, and historically, they’ve lost. The courts have ruled in favor of this use of the cells for science because they worry about inhibiting the progress of science and they think well, if we give money to people or give them that control, maybe they’ll stop donating, they’ll hold out for money, when in fact most cells aren’t actually worth much.
But one of the other things I hear as I’ve been traveling around and talking about this is I’ve talked to everyone involved in those lawsuits and I’ve talked to thousands of people in the general public, and across the board they say we understand this is really important research, it’s important to donate cells for it. We just want to know what’s happening. We don’t want to find out after the fact that people are taking these things and commercializing them.
So I think no, there were no laws broken, there is no sort of pending lawsuit about this, but I do think that we’re at a place where science and policymakers are starting to look at okay, how do we deal with this going forward so that people do continue to let us use tissues in research, and we kind of disclose what we’re getting out of it.
Tavis: I guess in my mind there’s science for the sake of science, whatever that means, and then there’s science that’s deliberately being done that we know is going to lead to commercialization – somebody’s going to make some money off of this.
Tavis: So I guess I could buy the argument if it were, again, science for the sake of learning and growing and whatever, and advancing, but when that science, when there’s a direct line, a straight line between scientific research and profit, that doesn’t sit right with me.
Skloot: It doesn’t sit right with a lot of people. This is what I hear from people again and again, and I think honestly that a lot of that comes down to the healthcare debate, because what you hear from the scientific research is well, everyone benefits from this. We need the financial incentive for pharmaceutical companies to develop drugs or tests, and so there has to be commercialization there, but everyone benefits from the research so everyone should give samples.
But in fact in our country not everyone does benefit, because what you have is a system where the samples are taken from people, often without them realizing it, turned into products that are then sold back to those people, and many of them can’t afford it, particularly minorities, particularly the poor. So I think that in a lot of ways the way that this has all been structured doesn’t take into account the way our health system actually works, and that that’s what people are mad about. I think that the commercial side of things would be less – people would get less angry about it if they actually felt like they had access to the care, but yeah, tax dollars are paying for the research, human cells are going to make the research possible, and then they still don’t get access to it.
Tavis: You are young enough and energetic enough and full of enough ideas that this will not be anywhere near the last book that you write. I know that there’s much more in you. But if it were to be the case that this were your, shall we say, magnum opus, if this turned out to be the contribution for which you are known in the world, I assume, although I could be wrong, you’d be okay with that.
Skloot: I would, yeah, and I’m actually, I’m working on a kid’s edition of it now, so I’m basically rewriting it for 10 to 14, 15-year-old kids, and when I finish this book I thought it took me almost 11 years to write and I was like, “I never want to write the letters ‘HeLa’ in a row ever again,” and then now here I am doing it again. (Laughter)
Because I do think it’s so important, and so yeah, I have other ideas in the works, but I know full well that I will always be associated with I am the woman who wrote this. No matter what I write in the future, this is going to be the thing that people probably think of me most about, and I take that as an honor.
Tavis: You should. You should be very, very cool with that. The book is called, as if you don’t already know, because it’s been on the list for a year already and it’s going to be there a lot longer – I was saying to Rebecca if she plans to go home eventually when this tour is over, when the book falls off the list, she might not get home for another few years, it’s going to be around for a while.
“The Immortal Life of Henrietta Lacks,” written by Rebecca Skloot. Rebecca, good to have you on.
Skloot: Thanks. Great to be here.
Tavis: Glad to have you back.
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