I reviewed Rebecca Skloot
's remarkable book, The Immortal Life of Henrietta Lacks
, for this week's paper. The story of the most important cell culture in the history of medical science, and the woman from whose body the cells were removed without her consent, is an amazing read, and I was thrilled to have the chance to interview the native Portlander (her father is Portland poet and novelist Floyd Skloot
First, a brief summary: Henrietta Lacks
, a 30-year-old black woman who checked into Johns Hopkins 60 years ago with an abdominal lump that turned out to be cervical cancer. A sample of cells from that cancer, taken without the consent of Lacks or her family, turned out to be immortal; the cells, dubbed HeLa, bred in enormous quantity and shipped to researchers all over the world, essentially made possible the medical revolutions of the past half-century. But no one told Lacks, who died in 1951, her body riddled with horrific tumors, or her family, who lived in poverty in Baltimore, about the cells until 1973.
How has the family of Henrietta Lacks reacted to the book now that it's published?
Going into it, I didn't know how they would react for sure, and it kind of depends on the generation—there's a lot of Lacks' now. A lot of her kids are still alive, there's grandkids, great-grandkids, there's great-great grandkids. And Henrietta's kids, initially they didn't really think anyone was going to read it. Their whole lives, people have sort of not cared about their story, and they've been passed over again and again, and I think they thought "well okay, she's finally wrote the book." I think for a while they were not entirely certain the book was happening at all, because it took so long—you know, ten or eleven years—and I think they just thought no one was going to read it. And then the grandkids—Henrietta's children's children—started saying, "no no, people are gonna read it, I think they're gonna care."
The response has been really great for the family—there's been in some ways a lot of healing through that process for them. Henrietta's children don't read very much, and so their children have been reading it out loud to them, which has been great for the family.
The grandchildren are another generation where no one talked about what happened. So no one ever told Henrietta's kids what happened to her, and then her children never talked about what happened to them to their own children. And so there was just this long line of people in the Lacks family not knowing what had happened in the generations before them, so when the book came out—when I got the pre-publication proofs—I sent a huge box of them, and they really got a lot out of it. I think partially it opened up this conversation in the family where they were talking about what had happened to them in the past, but then also her grandkids didn't know the story. They didn't know what Henrietta had contributed to medicine, they didn't know what had happened to their own parents to make them as angry as they'd been so for the grandkids' generation there was sort of this "oh okay, this all makes sense now and what's kind of great for them is they're one generation removed from the really painful part of the story, so they're really kind of ecstatic about how great Henrietta is, and they're like "our grandma's a rock star".
The great grandkids, the great great grandkids, they're going to school and being like "my great grandmother was one of the most important people in medicine." So for them, they're really just excited bout the science of it, and they've gotten really into reading that part of it, and actually a whole group of them is going to go into a lab pretty soon at Hopkins with another young researcher who wants to help some of the younger generation, like between the ages of maybe ten and fifteen, do some summer projects where they're doing some research on the cells, and they can get to see them and stuff, so that's been really great for them. And I think it's been really good for Henrietta's kids to see their own kids be excited about the science part, and not be afraid of it and not be feeling sort of damaged by it.
They've been coming to a lot of my events. I'm on this pretty crazy book tour—I'm traveling until June—and when I was in New York, Baltimore and DC, these groups would just sort of show up at my events. The first one was they'd driven up to New York for the release event. Being Lackses they would always show up late, 'cause that's what they do, so I'd have finished talking about the book and doing a reading and giving everyone an overview of the book and then anywhere for four to ten Lackses would walk into the room and the crowd would just go nuts-- cheering and standing ovations-- and scientists right off the bat would start standing up and saying "here's what I did with your mother's cells, and thank you, I'm sorry that this is hard for you and no one told you" and they would get these long lengths of people asking for their autographs on the books, and so there were several events-- Lackses ranging from 6 to in their 60s signing books.
In a sense I think it gives them some kind of ownership to the story that they've never had. You know, historically, the story has always been about Henrietta, not her kids. Even for them, they were always very worried 'we want to get Henrietta credit for what she did for science and make sure that she was treated okay" and all that, and even the Lacks children never really stopped to step back and say "oh, something really happened to us too" and its really sort of painful at points, and I think what sort of surprised them a bit is that that's what a lot of people focus on, is that what they're focusing on emotionally more than anything is what happened to the kids... so I think all of these things combined has been their sort of experience after the book was published, and none of it was sort of things I could have hoped for, but I just had no clue what was going to happen.
WW: Within the first three chapters, you become a character within this book At what point in the course of your reporting did you realize it would be impossible to tell this story without including yourself?
I fought against it for years. I would come home from my reporting trips with stories like the faith healing thing that happened, and all the crazy stuff that was going on, and everyone—my agent, my friends—was like, "you have got to put that in the book, that's part of the story, their reaction to you is part of what will show people what they've been through." And I kept being like, "no, no, it' s not about me"
WW: it goes against every instinct of yours as a reporter
Rebecca Skloot: Exactly. I teach reporting, and I'm always harping on my students, "stop inserting yourself into other people's stories." So I really resisted a lot and even Deborah at some point was like—her line she used to say wa,s "don't you leave me alone in that book by myself!"
When we were at Crownsville and I saw how traumatizing that was, that she was really starting to spiral into something that was really dangerous for her, there was a moment where I was certainly filled with, "this isn't what normal reporters do, this is not what you think of when you think of the normal reporter-subject relationship." And then when her cousin Gary literally exorcised the cells from her and stuck his hands on either side of my head and said “Give them to her!” then that was really the moment where I knew that I had no choice.
It wasn't about me inserting myself into their story, it wasn't about it being my story, It was just that I had become a character in their story, I was another in a long line of people who had come to them and had an effect on them, and really alter their lives in some way. And some of it was difficult for Deborah, but I think in the end it was something she really wanted. I had sort of wrestled with the fact that once this train sort of started there was no stopping it, because she wasn't about to let me say "I'll just go do the research and I'll tell you what I find." She was like, "oh no you don't, I'm coming!" And also just that it would have been dishonest to leave myself out. Because I did put them in these situations. They didn't just spontaneously go to the lab [to see some of Lacks' cells]. It felt like it would have been dishonest in terms of that. I felt that it was important for people to see the complexity of it.
WW: What is it like to report a story for a decade?
Rebecca Skloot: Exhausting. It's amazing and it's exhausting. One of the things people often ask me is, "don't you wish you had done this faster? Why did it take so long?" And one of the things I've realized now about reporting a story for so long is it changes your understanding of it. If I had written this book five years ago, I would not have understood it in the way I did in the end. It's such a complicated story with so many different factors, it's a story that historically has been very easy to portray as "bad guy scientists do something to victim family"—and part of the time that it took to do this was getting the whole story for the family—but also the whole scope of all of this, and then trying to really process them all and synthesize them into something.
It was a level of getting to a deeper understanding about the story that I couldn't have had if I had just been doing the reporting for a shorter amount of time, and I was also growing up with the story. When I started working on it, I was a grad student and I was in my 20s. I really didn't know what I was doing, so part of it is that I was learning to be a writer and reporter and I was trying to build a freelance carrier to break into publications so I could then go on and hopefully get the book published. The book was sort of woven within all of that. The freelance work I did was sort of strategic, you know, "I'll break into this magazine because five years down the road it's the right audience to know about me and hopefully do an excerpt of my book." So it was sort of woven throughout the building of my general career as I was doing reporting and I just learned so much. I think I'll be figuring out what I learned from this for years to come.
WW: Your account of your first trip to Baltimore made me really panicky.
Rebecca Skloot: You and my father. Yeah, my parents, when they read that, they were like, "oh my god, I can't believe you did that and I'm really glad we didn't know you were doing that." It was scary. You know, when you start off as a reporter, it's not like they teach you how to do that stuff, it's not like there's a class you take that's like, "here's how you show up at total strangers' houses in areas that are completely foreign to you and start knocking on doors and asking questions." You just sort of get thrown out there. It was scary, going down there and being a young woman by myself in places that I didn't know, neighborhoods that are known for their very high rate of violent crime, but then every single time, the people who walked out of their front doors and said "what are you doing here," or the people whose doors I finally knocked on—there was absolutely nothing to be afraid of. Well, except for Zakariyya [Lacks], of course (laughs). He was definitely one of the scariest people I've ever met in my life. But yeah, you just sort of do it.
WW: United States District Court Judge Robert Sweet just ruled last week that Myriad Genetics doesn't have the right to patent BRCA 1 and 2, a pair of genes linked to breast cancer. Could you tell my readers and me what we are to make of the decision in light of Henrietta Lacks' story?
Rebecca Skloot: There are a couple interesting things. The John Moore case
, which is that chapter in the book, "Who Told You You Could Sell My Spleen?" has been the precedent forever. Since that happened, that's been the legal precedent for this issue of who owns your tissues: you don't have any property rights for your tissues once they're removed from your body, and people in general should not be allowed to profit off of ay biological materials, because it would inhibit science and it would interfere with the progress of science. In the argument they referenced Henrietta Lack's case and said, "look, people don't have a problem with this. There's this woman, her cells have been alive since the 50s, nobody's sued." Of course, [the family] didn't sue because they didn't know, and they didn't have the means to sue.
That decision with the Moore case essentially took all of the profit potential, and the question of whether people should even profit, and removed the patients from the equation and put it all in the hands of scientists. The interesting thing is about the BRCA case is that it's a bunch of scientists
saying. "profits have gotten in the way of science." Originally it was, "if we let the general public in on this, it's gonna interfere with science," but now you've got some of the most prestigious scientists from prestigious universities saying, "no, anybody profiting from this stuff and patenting this stuff and controlling it in any way is a problem and is interfering."
The fact that the court ruled in favor of the scientists in this case and against the patent holders is pretty monumental. Anybody who's followed the history of this stuff was pretty stunned, because this judge went against what many other judges since the Moore case have said, which is, "no, no, you've got to let there be a financial incentive for this research to happen—otherwise it won't."
It will be appealed, there's no question about that. What the appeal will definitely lean on is, if you overturn these patents and say that scientists and companies can't use these patents for commercial gain, then no one's gonna do this research and we're all gonna suffer, because there's no financial incentive to do it. The "it's going to interfere with science" argument has been used against every single change in the regulation of science, forever. If you look at the beginning of IRBs, which is also in the book, this history of how the oversight of research on human beings really started in the US and started to be governed by different laws, that was the response—and it doesn't. It hasn't, historically, but that argument is a very powerful one because people do need science and we do need medicine to progress
I do think the scientists I've talked to and the people who have been following this for a long time—their response is that this is a huge step for freedom and science, and for moving research forward, in fact. If you look at the arguments particularly against the breast cancer gene patent, but really all of them, is that there are scientists who have gotten "cease and desist" letters from the company because they didn't pay to license the patent to do breast cancer research. So there's quite a bit of research that hasn't happened because scientists couldn't afford to license a patent or they didn't and then got the cease and desist letter, and there's always questions about whether Myriad [Genetics] has got a monopoly on the patent, that they won't let people do research that will create products that will compete against theirs, and I think for that part of the case as well. So I think the case has the potential to make it so genes are no longer patentable, which would change the way research is done by removing the need to license them.
WW: In your opinion, is there any sort of "best practices" measures that medical science could take to prevent the sort of family trauma that occurred to the Lackses?
Rebecca Skloot: One of the things that's sort of part of the larger discussion right now is just this question of consent. They didn't know what was being done to them. No one knew what had been done to Henrietta, which was standard practice at the time. But you know, we still don't know. Most people don't know that their tissues are being used in research to start with. That they've signed little lines on consent forms that say "you can use my tissues in any way you see fit" and use them in research. There is not an informed consent happening when it comes to tissue research, and people want that.
I've talked to everyone involved who's alive—people who've been involved in pretty much every lawsuit over the use of tissues for profit or without consent—and across the board they say, "if they would have just asked us, we would have said yes." So I think that's obviously part of this larger discussion that's happening. How do we move forward with tissue research without inhibiting it, while letting people know that it's happening? I think on a larger scale that's an issue that needs to be talked about.
You know the stuff with the family, so much of it is just about the importance of communicating science to the general public—specifically the general public that is wary of science. There are a lot of people out there, like the Lacks family, who are actually scared of science—particularly people of color, people who have historically been used in research without their consent in ways that have been really damaging.
The response across the board to the book has been scientists saying essentially, "thank you, this gives us a case study. We can now use this to look at the way communication broke down in all these different places and the points at which someone could have helped them so this didn't become so traumatic."
If anyone at any point while they were doing research on the family, if someone had just come to the Lacks family during the process of getting tissues and said "what do you think we're doing? Tell me what it is that we're doing, just so I can make sure we're on the same page," they would have said, "you have Henrietta alive in a lab, you're doing research on her and now you want to test us to see if we have cancer." None of which is what they were doing. They didn't try to get informed consent, they weren't concerned about whether the family understood what was happening, so I think really in that sense in terms of the trauma experienced by the family, it's all about communicating what's going on and disclosure, both in terms of what scientists are doing research-wise and also financial interest disclosure.
That's something that really gets people—when they find out, "hey, someone is potentially profiting off this and we're not, and we should know that going in." A lot of people would say, "fine, do that, that doesn't bother me," but some people might feel otherwise, and for the Lacks family, this tragic irony that their mother's cells contributed so much to science and they're constantly hearing about how this drug and that drug developed using Henrietta's cells is so important, you know, they can't get health insurance
. They can't afford it and they don't have access to the medical care developed using the cells, and that disparity is pretty glaring for them.
I think that's become part of the health care debate. One of the arguments that has always been used about commercializing cells, patenting genes, is that everyone benefits from doing this, we commercialize these things, do all this important research with them, everyone benefits, because of the drugs and things that result. But in fact not everyone does benefit... I think really what it comes down to with what could've made things less traumatic for the family is communication and education.
WW: How do we go about bridging the unfathomable educational gap between these doctors and their patients?
Rebecca Skloot:I spend a lot of time speaking to these different groups of scientists and inevitably someone will ask me, "OK, so what do we do? You know we know this problem and we want to communicate this stuff, but we never know whether they're understanding us." One of the things I tell them is what I just said, which is, "ask them what they're hearing." But one thing that isn't in the discussion of how to handle communication in science is, if you go into a hospital and you speak French, Spanish, or any language really and you don't speak English, you will get a translator. There are translators on staff; they will find one for you to make sure you understand what's going on. There is no translator for science.
If you go into a hospital and you don't speak science, they're not going to call the science translator and have someone come in and help explain things to you, and I think it's a legitimate question: should we have that? A lot of scientists are now taking classes in communications and all that, but they're on a huge time crunch when physician researchers, or even just physicians, are in a room with a patient—they're like 'we're in, we're out, we're in, we're out'. Maybe our health care system is at a place where we need some sort of research translators in places that are research-heavy.
SEE IT: Rebecca Skloot reads from The Immortal Life of Henrietta Lacks at Powell's City of Books, 1005 W Burnside St., 228-4651, powells.com. 7:30 pm Monday, April 12. Also at OHSU's Old Library Auditorium at 4 pm Tuesday, April 13. Free tickets available here.