Radiolab Extra: Henrietta Lacks 35:13
JA: Hey this is Jad. We just wanted to throw an extra episode on our feed in honor of a movie that we’re really excited about. But first, a couple weeks ago, I stepped in here and I sort of laid out a challenge grant that we had gotten from the Tao Foundation, and the deal was if you remember, that if 700 of you guys listening step forward, agreed to kick in seven dollars a month to support the making of Radiolab, then the Tao Foundation would give us 70 grand to help make the show
JA: So, again, 700 people decide to donate 7 dollars a month, we get 70 grand. That was the deal. Alright, so. How did we do? How did you do? You crushed it. Just crushed it. OK, we needed 700 people as of right now I think we’re at somewhere over 3,000. You did so well. We did so well. The Tao Foundation just came back to us and upped the ante. Full on stretch goal
JA: Because here’s the thing, 3,000 people is amazing, but that is just a tiny percentage of the people that actually listen to this podcast. So their thinking is, let’s capitalize on this momentum, get the other 99.9 percent involved, so their new stretch goal is they have agreed to match any donation that comes to Radiolab, right now, up to 10 grand. So if you decide to make the 7 bucks a month deal, that becomes 14 dollars a month. If you decide to do a one time donation of 60 bucks, that’s now 120
JA: Tao will matc it. And this, just as a reminder, this is how we’re able to do you know the year long investigations in the police shooting or the nuclear chain of command just to name the last three that we’ve done, this is how we pay for it. And this challenge grant will allow us to go farther. So if you’re down, go to Radiolab.org/match or you can text the word match to the number 69866. Again, text the word match to the number 69866
JA: A little formal pop up and you can donate in a matter of seconds and thank you.
JA: Alright, so tonight is the premiere of a move we’re really excited about. It’s called the Immortal Life of Henrietta Lacks. It stars an up and coming actress, maybe you’ve heard of her, Oprah Winfrey.
JA: And it is based on the book of a very very dear friend, Rebecca Skloot. Best selling book. You’ll be able to watch the movie in a couple days on HBO, but in the meantime we’re just so proud of Rebecca. Thrilled that this movie is getting out to a wider audience because everyone should know this story. SO in honor of that, we’re gonna play for you a documentary that we produced with Rebecca. We worked on it for a few years with her while she was sort of formulating the book. And it includes tape that you won’t hear anywhere else.
RS: We can move me closer
ROBOT: Hello, hello
JA: And the story
Is about a tumor that expands and never stops. Begins in 1950 a black woman in Baltimore is in her bathroom and she discovers pretty much all on her own that she has cancer
RS: It’s all a bit of a mystery how she initially knew this, but she knew it was there.
XX: A knot she called it. She had told her cousins for awhile that she thought there was something wrong her, with her womb
RS: And she climbed into her bathtub and she slid her fingers up inside of herself and found this lump
JA: Chapter 1
RS: First she went into her local doctor
HJ: By chance I happened to be an attending at that time
JA: The guy she eventually ended up seeing at Johns Hopkins University was this fellow, Dr. Howard Jones
HJ: I’m 98, next month I’ll be 99
JA: Wow. So when she came in to see you, can you tell me anything about what she
HJ: Well she was a--
JA: You don’t remember anything?
HJ: No I really don’t
JA: But you remember her tumor, right?
HJ: Oh absolutely. I never saw anything like it before or after
RS: And this didn’t look like a normal tumor. It was, it was deep purple and
HJ: About as big as a quarter
Sort of shiny
HJ: Very soft. That was another thing about it. On examination
HJ: When you touched it, you might think it was red and jello
There was something really strange about the way it looked
HJ: There was something weird about it
JA: So doctors took a sample
RS: Yeah, so they would cut off these little teeny tiny pieces
JA: Really small
RS: Teeny tiny
HJ: A bit or two
RS: They would take a piece
JA: Put it in a tube
RS: And one would go to the lab for diagnosis
JA: And in this case, since it was Hopkins
RS: They would take an extra piece and give it to a man named George Guy
JA: Two. So George Guy was a researcher who worked at Hopkins. He had a deal with the clinic that anytime they got a patient with cervical cancer, they’d give him a tiny piece
Of the tumor. What he really wanted to do, his main mission--actually not just his, scientists everywhere were trying to do this, they wanted to find a way to grow human cells outside of a human being
RK: In a dish?
JA: In a dish
RS: George Guy had been trying to do this, working on this for decades
JA: And why exactly?
RS: Um. It’s sort of like, it’s sort of like having a little tiny bit of a person in it, in a lab that’s detached from then so that you can do whatever you want with them. You know, you can’t bombard some person with a bunch of drugs and just wait to see how much they can tolerate before their cells all explode
RS: But you can do that in cell culture, so--
JA: Oh, so this is like, this is like the basic thing you need to study human biology?
JA: You need cells in a dish
JA: Problem was, anytime they tried to grow human cells in a dish [knocking]
MK: My dog--come here
They would die
MK: Yeah they die.
This is George Guy’s former lab assistant
JA: Can you just tell me your name? You know, my name is so and so
MK: My name is Mary, I’ll put my maiden name in there.
JA: Oh sure
MK: Toy Kubichek
JA: Mary lives just outside Baltimore, about an hour where she used to work with George Guy
MK: This is--this is Dr. Guy
She showed me some pictures
MK: And he’s sitting at a microscope
JA: Look at him, he looks--he seems like a really big guy, a really tall guy
MK: He was a big guy
At least 6’5”, judging from the picture
MK: Yeah, he was
And in every slide that she showed me, he had kind of a crazy smile on his face
JA: Like he’s got a, like he’s having a good time
MK: He’s like a big bear of a man is what I always thought
JA: Oh yeah
In any case, Mary says they were completely stumped at why the human cells always died
JA: But they just did
So, on the day that George Guy walked in, handed Mary a tube of a little chunk of a nameless woman’s cervical cancer inside
MK: I knew nothing about her
No one expected anything
MK: No, he was doing--well, he probably was ever hopeful, but you know. I was eating lunch and I thought, oh the heck with it, you o
know, it’s not gonna grow. I’m gonna finish this sandwich. And that’s what I did
MK: Then I went in and
She gave the cells some food
MK: Did my usual
Turned on all the machines and left, came back the next day. They hadn’t died. So she came back the next day. And they were growing. And then the next day. Still growing.
MK: They just kept plugging along.
And the next
RS: They grew a lot
JA: Rebecca says they doubled in size
RS: Every 24 hours
RS: They just grew
MK: All of a sudden, you know, I had--kept transferring them and making more tubs, kept transferring them, making more tubes and transferring--they were very reliable
RS: And stronger
MK: They just kept plugging along, plugging along
JA: Meanwhile, the woman who had spawned all these cells died
RS: Right. Officially she died of uremia, which is toxicity of the blood because she was’t able to get rid of the toxic waste that usually goes out in your urine
MK: Plugging along, plugging along
But not her cells
MK: Plugging along
CLIP: And to tell us this story, it’s a privilege to introduce Dr. George Guy
JA: It wasn’t long after that George Guy appeared on TV, holding in his hand a little bottle
CLIP, GG: Now let me show you a bottle
MK: Plugging along
CLIP, GG: In which we have grown massive quantities of cancer cells
MAN: So did you want to look at the photos and--
JA: You can’t really get a sense of how aggressive this tumor was until you go to the Hopkins archives and look at George Guy’s pictures and videos.
MAN: OK, this is the film can here that cell film
Then it hits you
CLIP, GG: These are enlarged ten thousand times
JA: Oh my god
Swirling, hurricanes of cells
JA: Just like thousands of little pods
CLIP, GG: Some small, and some very large
JA: Clumped together
MK: Kept transferring them, making more tubes
CLIP, GG: See them under the microscope
JA: It looks like something has just exploded
MK: Plugging along
CLIP, GG: They’re going to make--
JA: That’s amazing
MK: They just kept plugging along
CLIP: They just keep getting bigger and bigger
CLIP: It’s indestructible, it’s indescribable, nothing can stop it
RS: Why hers just sort of took off and grew and the other ones that they had tried before didn’t is just a little bit of a mystery. Nobody really knows.
JA: Nonetheless, George Guy knew what he had. This new cell line was what they’d all been waiting for. So early on, right after this woman died, George Guy sent Mary back down to get more cancer cells from the corpse
MK: Oh, he sent me down to the morgue yeah
MK: Oh yeah. SO I went down there and the coroner, I don’t know who he was. Dr. Guy was there too and they were standing down at her feet sort of.
JA: Meanwhile she’s like what?
MK: She’s lying out there, she’s already open
MK: I got some samples. The coroner would take them out and give them to me
JA: What’d she look like?
MK: I couldn’t look at her face. I couldn’t look at her. The only thing I looked at were her
toes and they had chipped nail polish on them and that was really like, Oh this is a real person.
JA: What was it about the nail polish that hit you?
MK: Because it was chipped. Because you know she hadn’t been able to take care of
her nails for a long time if they got chipped like that.
MK: And it showed that she was proud of herself. Not everyone wears nail polish on their
JA: Yeah. Yeah
JA: Over the next several months, while this woman’s body lay decomposing in the ground, George Guy and Mary produced hundreds of thousands of her cells, her tumor cells. And he named them the HeLa strain
JA: Like HeLa. H-E-L-A.
RK: Uh huh
JA: No one would actually know why he had named them that for about two decades.
JA: But what he did with these cells, you know, would be unusual nowadays
Like if somebody now found a cell that was special, they’d run off to the patent office and then sell is to MERC for a billion bucks
JA: But George Guy?
MK: He just passed them out freely
Didn’t try to make any money off
MK: Because it was this nice, new thing that could help science
Mary says that George Guy began to send HeLa all over the world.
And pretty soon she was in hundred of labs
RS: And, you know, this was in the midst of the polio epidemic
CLIP: This is the season when polio is at its worst
JA: WE’re talking early 50s, right?
RS: Yeah. So this is 1951, 52, you know
RS: Schools are being closed, kids are being kept inside
CLIP: To this cruel disease, medical science still has no complete answer
RS: There was this enormous effort to develop a polio vaccine
JA: Problem was, in order to develop a vaccine, you had to have enough poliovirus, you know, enough quantity to be able to study in a lab. And they had no way of making enough
RK: So what’d they do?
JA: Well, one of the guys the Guy--one of the guys that Guy had sent the cells to
RS: This collaborator friend of Guy’s
JA: Discovered something kind of amazing
JA: Which was that polio loved the HeLa cell. Put polio inside a HeLa cell, HeLa would copy, and in the process would make more polio
RK: So it’s the super xerox cell, no matter what you wanna do--make a copy, make a copy, make a copy.
JA: yeah. So now they had a way of making polio
RS: HeLa could just be a polio factory
JA: And so the government made a factory
RS: But the Tuskegee Institute
JA: A real one
Rs: Literally a factory so they had these big, you know, stainless steel vats of culture medium that were sort of rotated constantly
RS: Autoclaves for sterilizing other equipment, a row with you know, four or five microscopes, crazy Frankenstein-ish gizmos. They had this machine that was like an automatic cell dispenser and it had this sort of long mechanical arm that would squirt a certain amount of this culture medium with HeLa cells into a tube
JA: Wow this is ike the beauty of industry right here
RS: Yeah it is absolutely
JA: The cells that were produced at this factory, she says, were used to test the polio vaccine
CLIP: The potent vaccine to prevent the dreaded disease
RS: The tests they were doing were enormous. It was the largest field trial ever done. At it’s peak, the Tuskegee HeLa production center was producing about six trillion cells a week
RS: Which is kind of inconceivable
JA: But that was actually only the beginning, says Rebecca, because this factory led to an even bigger one that was for profit
JA: and that second factory
RS: Was the first time any human biological material was commercialized
JA: So this was the first biotech company
RS: Yeah, basically
JA: OK, but when the first started mass producing HeLa, what sorts of things were done to these cells? What sorts of problems were investigated?
RS: Like anything you can imagine. So they infected HeLa cells with every kind of virus. Hepatitis, ecoin, encephalitis virus. Yellow fever. Herpes. Measles, mumps, rabies, whatever. Like you just, any vaccine. And this was just an--this was a revolution for scientists. There was research on chemotherapy drugs, HeLa cells went up in some of the first space missions
RS: Yeah, so they were--
JA: HeLa went into space?
RS: HeLa went into space, which everytime I think about it I hear, HeLa in space. [laughter]
JA: Why? Just because?
RS: the premise was to see what happens to human cells in zero gravity, you know, if we’re gonna be sending people up into space, what’s going to happen to them up there?
RS: So HeLa went up before any humans did. And then she eventually went up--she. The cells--
JA: that was an interesting little slip up there.
RS: yeah, I know [laughter]
JA: OK, so let’s actually skip forward in the story to the point where that, that slip up you just heard, that pronoun confusion gets… personal, you know.
RS: Well, what happens?
JA: OK it’s the late 60s
JA: and HeLa has led to a revolution in science and now there are hundreds of cell lines, not just HeLa, but hundreds. And somewhere along the way, scientists discover that HeLa is so aggressive that she’s actually be contaminating and taking over all of these other cell lines
RK: You just she. But I get your point
JA: [laughs] and she doesn’t know--it does it in the strangest way
RS: HeLa cells can you know, they can float on dust particles. They can ride on--
JA: They can what?
JA: They can float on dust particles?
RS: Yeah, so they can--
JA: you mean they can hop out of a dish and just get on a particle and jsut floar?
JA: Out the door
RS: up the stairs
JA: Down the hall
RS: One HeLa cell
JA: Into a lab
RS: Drops into
JA: Into a dish
RS: a cell culture where there’s other cells growing
RS: and because HeLa cells are sort of powerful cells, they take over.
JA: So on the heels of this catastrophe, someone at Hopkins decides to make a test. Let’s make a test that will allow us to genetically determine if a cell is HeLa or if it isn’t. And to make a long story short, this desire for a genetic test led scientists, and then journalists, to ask a questions which amazingly for 25 years had not been asked
JA: Who was this woman? And that’s when we found out her name. Henrietta Lacks.
JA: This is the sound of Rebecca reading Henrietta's medical records for the first time
RS: [shuffling] This is a 30 year old colored woman
She’s sitting with Henrietta’s youngest daughter, Deborah
RS: This is the second of November, so this is again when she was pregnant with you
Henrietta had five kids when she died at the age of 31. Most have no memory of her, because they were too young. And that’s especially true of Deborah.
DL: I was only 15 months old and I don’t remember anything about my mother.
RS: Yeah so she--you know, she had spent her entire life just sort of longing to know who her mother was and did she like dancing
DL: you know I always wanted to know what she liked to do, where she went, what she liked to eat
RS: Did she breastfeed Deborah? She was really sort of almost fixated on that idea. She wanted to know if she was breastfed
DL: Oh I don’t--I don’t know what I would give up just to, just to have her here, I’ll tell you. Just to see her and hold her
JA: So in 1973 when a scientist calls the Lacks family and Deborah hears that little bits of the mother that she never knew are still alive. And oh by the way can we take a blood test from you and your family because we’re having some contamination problem. We need to use genetic markers, blah blah blah. Wella s you could imagine
DL: Took my by surprise, it really did.
It was really confusing
DL: I mean, how much is that--how much of her cells is out there? You know
Eventually she went online, did some searches, and found
RS: Thousands and thousands of hits.
JA: Like for instance on HeLa clones.
RS: and Deborah had heard various journalists in the past had come to her and mentioned Dolly the cloned sheep and said, you know, your mom--they did this with your mom too. Meaning, that’s actually where the technology started. The first cells that were cloned her HeLa cells, but that was just cloning a cell. Not cloning an entire being
RS: But that distinction is very complicated, particularly for somebody who doesn’t know what a cell is
RS: So Deborah between what journalists had told her and googling Henrietta Lacks and clone, thought there were thousands of clones of her mother around.
JA: Really. You mean like a bunch of Henriettas?
JA: Walking the streets?
RS: walking around.
JA: And Rebecca says that one of Deborah’s biggest fears was bumping into one of these clones
RS: She said, you know, she would say, I would have to go talk to her and she wouldn’t know I was her daughter, and I don’t know if I could handle that.
RS: it sounds so fantastical. Like how could someone believe that there were copies of her mother walking around? But at one point, 25 years after their mother died, someone called and said, Hey, part of her is still alive and we’ve grown enough of her so that it could wrap around the Earth several times.
JA: At that point all bets are off
RS: Yeah, right. Exactly.
JA: Not to mention that it’s actually not that crazy. Because your DNA is in your cells, so if your cells are taken out of you and they still grow, well isn’t that still you?
RK: It’s of you, but it’s clearly not you, and it’s going on and on and that’s--it’s a funny middle space, that’s for sure.
JA: yeah. So here’s what happened. As Rebecca went off in search of Henrietta Lacks, every so often, Deborah would come along and sit with her as they interviewed you know, anyone they could find. Friends, family, and eventually, o ver many many years, a picute does emerge.
JA: Of who this woman was
RS: She was born in Roanoke
JA: 1920, Virginia
RS: and I think she was the tenth of the eleven children.
JA: But apparently she was the one that stood out
RS: Everybody talked about her as just being, you know, she was the catch
SS: Oh my goodness, I don’t think I could top her
JA: This is Sadie Stertivan, Henrietta’s cousin
SS: She was a beautiful girl. I was beautiful myself, but Henny was very pretty.
GX: Brown eyes, long hair
JA: and this is Henrietta’s sister, Gladys
GX: Nice tan complexion
JA: Everyone they spoke with zeroed in on the same few points. Like first
RS: she was really meticulous about her nails
JA: Always painted them red
RS: this very deep red
JA: And second, Henrietta just had this
RS: She was very--
RS: Forthright, very sassy
JA: Like her cells
JA: Now the unfortunate thing is when it comes to her life, you know how she lived. There’s not a ton of detail.
RS: October. So this is when she first ran into cancer
JA: But in that hotel room, when the two of them were flipping through the medical records, they did start to get some detail
DL: OK. Now here’s her autopsy
About how she died
RS: These are the things I’m gonna take notes about
JA: Was she in a lot of pain when she died?
RS: Yeah. Her--this was the hardest thing. She was eventually in a--in apretty unbelievable amount of pain
RS: She complained of pain in her right lower quadrant
RS: Wailing and crying and you know, moaning for the Lord to help her and
JA: According to the records, doctors tried everything
RS: Morphine, they injected a hundred percent alcohol straight into her spine
RS: In spite of the pain, in spite of the alcohol injection last week
RS: And she would have these fits of pain. Sort of spasm where these waves of pain would hit her and she would rise up out of the bed and thrash around. So they strapped her to the bed and her sister, along with one of her friends, you know, one of them would tighten the straps and the other would put a pillow in her mouth so that she wouldn’t bit her tongue
DL: The--if I only just had the chance to take care of her
JA: Now, dealing with how her mother died was one thing. But the cells made it more complicated
RS: For Deborah, her mother was alive in these cells somehow. So if that’s true, that left very big question. And the first of them for Deborah was, how can Henrietta rest in peace when part of her, part of her soul, is being shot up to the moon
RS: And injected with all these chemicals and radiated and bombarded
DL: It was just so painful knowing you know they had her cells on the back of a donkey
going to Turkey, you know, in airplanes. Just going all over the world, uh. I just don’t know
RS: You know, she worried about them--she worried that it hurt her mother when you infect the cells with ebola, does somehow her mother feel the pain that comes with ebola?
JA: And had a scientist ever like sat down with her--
JA: No. I mean just explain to her this is--
RS: No. No. Never. Nothing
JA: Because it just strikes me that it wouldn’t be that hard to explain like when you take cells out of a body it’s kinda like when you cut your fingernail off. It just doesn’t--
RS: But your fingernail doesn’t keep growing and living after you cut it off. It’s a, it’s really hard. There is no other example of some way you can take something from someone’s body and have it keep living and not have a person feel it.
JA: And all these worries, sasy Rebecca
JA: Began to build in Deborah’s mind. And build, and build
RS: There came this point--so we were
RS: At her cousin’s house
JA: This is her cousin Gary
RS: She was broken out in hives and she was telling him all the stuff that she recently learned
JA: You can almost hear it on the tape, she says to him
JA: She can’t carry the burden of these cells anymore. She can’t do it
DL: I can’t [inaudible] I don’t want to [inaudible] anymore
RS: And I had been sort of trying to talk her down and he was trying to talk her down
RS: And then just out of nowhere, he just started, um, singing
RS: And he started preaching. He--
GX: There’s some things that doctors cannot do
RS: He held her head in his hands
GX: And we come to you tonight, the author and the finisher of our faith. And we thank you for being a wing maker, you make a path in the mighty woods, you called the mountains and skip like rams and the [inaudible] we thank you.
DL: Thank you Lord
GX: Thank you
DL: Thank you Lord
GX: Thank you
DL: Thank you Lord
GX: Thank you
DL: Thank you Jesus. Hallelujah! Hallelujah! Hallelujah! Amen, thank you. Amen. Amen. Thank you. Thank you, amen, thank you
RS: And she just… relaxed
DL: She’ll like that man, I feel lighter [laughs]
JA: She didn’t realize ti then, but that night, Deborah was on the verge of a stroke.
RS: Want to walk up and see the building?
DL: Wanna walk? You mean--
RS: He said it’s just up this hill
JA: One of the most striking moments of this story is when the two of them visit Hopkins
RS: How do you feel?
DL: So far so good
JA: And Deborah meets her mother’s cells for the first time
CL: I’ll show you that room and then I’ll show you the cells
JA: Because a scientist had finally contacted her.
RS: Christoph Lengauer, the scientist who invited us into his lab to see the cells, he had projected them onto a screen
CL: Don’t be confused, they look green here, OK
RS: They’re sort of neon green in this particular case because of the way they were stained and projected
RS: So they’re very ethereal looking. They’re very sort of--they glow, you know. I mean when you think about angels, right, you think about something glowing. Christoph turned on this screen and she just, you know, I mean Deborah just gasped. She just-- [gasp]
DL: Oh my god.
CL: This is about 200 times bigger than what they really are
JA: A swirling hurricane of cells.
RS: Did you say, all that’s my mother?
RS: Pretty [inaudible]
DL: It’s hard to believe
DL: Oh my god
RS: Christoph gave--he gave her a vial of these cells that she could hold in her hand. Adn they came out of a freezer so they were very cold and she sort of rubbed her hands together with the vial in her hard, to sort of warm them up
RS: And sort of blew on them to keep them warm. And they she just sort of whispered to the cells, it was sort of incredible. She just raised them up to her lips and said, you’re famous, but nobody knows it.
JA: Just a week before Rebecca and I spoke in the studio, she got a call, that Deborah had died
RS: She had a heart attack and died in her sleep.
JA: OK, so, um. As you may know at this point, that segment was based on Rebecca Skloot’s book, the Immortal Life of Henrietta Lacks. It’s an amazing book. It came out right when we released that piece
JA: It’s been a couple years now, and recently we met up with Rebecca in Chicago. Just to get an update
RS: It’s like the book came out and then it just--
JA: Because since the publication of that book
RS: The whole story just sort of exploded
JA: It just took off. Scholarships were named after Henrietta
RS: Henrietta was given an honorary doctorate
RS: Highway placards and historical landmarks and buildings named after her. There’s a
high school called Henrietta Lacks High, HeLa High for short
JA: Meanwhile, the book is exploding, she went on this like insane book tour
JA: Members of the Lacks family began to join her
RS: It started off with just Sunny Lacks would go and do a sort of on stage Q and A and
people started cheering. And scientists standing up saying, I want to tell you what I did with these cells and I want to tell you why this is important for me and I’m sorry it was hard for you. And people reaching out, i’m alive today because of this--a drug that your mother’s cells helped develop or, you know, I do this in my lab. I mean they just--it never stopped. It was just a flood
JA: Which is, in a way, what Deborah always wanted
RS: She wanted to go to every event
RS: She wanted to be on every television show. She had her dress picked out for Oprah
like you know, eight years before the book came out. You know, she was, Deborah wanted this. This was exactly what she always dreamed of
JA: But then, just last year, something interesting happens, interesting and troubling
RS: So yeah, so March 2013, this group of scientists from Germany sequenced the
HeLa genome and published it online, where anyone can download it. You just click a button. I downloaded it. It was just there. And they did not ask the family.
RS: And my initial reaction when I saw this press coverage was, they did what? Because
within the HeLa genome, there’s also Henrietta’s genome, and some of that was--50 percent of that was passed down to her kids, and 25 percent potentially to her grandkids. But one of the things--so they put out a press release when this genome was sequenced. And on it, it had a little, you know, frequently asked questions the press might wonder about. And one of them was, can you learn anything about Henrietta or her children from this genome. And the answer was no. Can’t learn anything about them
RS: and I do--and I believe that they believe this. But this is a misconception. You can in
fact learn about people and in fact you cannot even hide people's private information if you try. And so one researcher took the genome and created, essentially, a report on Henrietta’s genes. You have X percent chance of bipolar disorder, alcoholism, obesity--you--it just has this huge range of things, and some of it is, yes. There’s some real potential privacy violation
RS: Like with the alzheimer’s genes and things like that, bits of information about her
RK: did Henrietta have, um.
RS: I will not tell you. [laughs]
JA: Well this report that this dude made, did he list all of these things you’re describing?
RS: Yes. So, and he sent it to me. So I called the Lacks’ and said, did, you know, did you
know anything about this? And--
JL: Rebecca had called
RS: And, you know, they did not
JL: And it kinda bothered us because we’re saying, OK, why wasn’t the family involved
with this decision making?
JA: That was Jerry Lacks
JL: Jerry Lacks Wie
JA: Henrietta LAcks’ granddaughter
JL: Back in the 50s you had Henrietta Lacks, her cells were removed without her family’s
knowledge, then you go in the 70s, my dad and his siblings, they took blood samples, used it for research. They didn’t give consent. Then you come 2013 and you have Henrietta’s--I felt as though it was her medical records being published publicly
RS: You know, their first question was, can you get them to take it down? And so we can
figure out what it is, what it means. So I reach out to the scientist and said, the Lacks family, you know, has asked that you take this down. And they replied immediately, they took it offline immediately, and then I contacted Francis Collins who’s, you know, the head of the NIH. I also reached out to Cathy Hudson who used to run the Genetics and Public Policy Center at Hopkins and is now over at the NIH dealing with a lot of these issues
RS: so I reached out to them and said, somebody needs to try to help the Lacks family
and get consent. Somebody needs to go back, pretend like this si starting now, and doing probably what should’ve happened in the the first place
JL: And I’d say like a couple of weeks after that, several weeks after that, that we had a
meeting with NIH. It was my mom, myself, my sister, my dad, my uncle, my brother David, my sister Kim, my cousin Ron, Rebecca Skloot. She was actually on the conference call.
RS: all the NIH folks drove up to Baltimore.
JL: We googled their names, Dr. Collins and Cathy Hudson and it was like, ooh we were
kinda--we was excited. We were like, yeah, we’re sitting in a room with the director
RS: They all met
JL: Just to listen to everybody, listen to our concerns, listen to our questions. What can
be done, what can’t be done?
RS: the Lacks family asked about everything you could possibly imagine
JL: Went over, you know, the information about, you know, gene mapping, sequencing
RS: Just the basic science of genomes
JL: To get a clear understanding of what the genome meant to science
JL: We don’t want to stop science, but yet we don’t want certain formation to just be
broadly available publicly
RS: So they laid out three options. One was, we don’t release any of them at all. And
then there was a second option which was release it with no restrictions, just put it out there like the germans did. And then there was a third option which was release it with restrictions. So the NIH would house it on their own servers and that in order to get access to it, you would have to send in an application that said
RS: This is the research we’re gonna do. There would be a committee forum that was a
group of scientists and then some members of the Lacks family
JL: The HeLa Genome Committee
RS: One grandchild and one great grandchild
JL: My brother David and my cousin Veronica
RS: And obviously, this is the option they picked. So yeah, there’s this committee and
they just, a few weeks ago, saw their first batch of applications. And then the news hit and it was the first time that they were part of the news. So--
JA: They the third generation?
RS: Yeah--the Lacks family. Like Jerry Lacks was on MSNBC live doing an interview
about this and she--you know, she’d never done this before and, you know, they were in every newspaper. I mean it was everywhere
JL: Yeah. It’s pretty exciting, yeah. We are stepping into the spotlight. It’s the
RS: The third and fourth generation of Lacks’
JL: It’s the great grandchildren
RS: This is their story now. And that’s--the other thing that is an undercurrent through all
this is Deborah is gone
JL: She was the one who was just so forceful
JL: And so dedicated with getting the information out there about her mom
RS: And you know when I look at the four years since the book came out, you know,
there are a few moments that stand out as incredibly emotional ones for me having to do with Deborah. But this--the first meeting, sitting on the speakerphone, listening to this meeting.
JL: These high officials sitting at the table, and have sincere concern about our
RS: If she could have said, what do I dream might someday happen? That would be
what she would’ve described
JL: I can just imagine her just sitting there and she just laughing, rocking back and forth,
twiddling her fingers, saying, yay. Just absorbing all of this, this excitement.
JA: Before we close, I want to thank Rebecca Skloot for giving us her raw tapes, her book, The Immortal Life of Henrietta Lacks is truly spell binding. You can get more information at Radiolab.org, sign up for our podcast there, Radiolab.org
RS: [beep] hello, this is Rebecca Skloot, Radiolab is produced by Jad Abumrad, our staff includes Ellen Horn, Michael Rafel, Soren Wheeler, Lulu Miller, Tim Howard, and Pat Walters. With help Adi Narahin, Aaron Sand, and Sharon Shaddock. Special thanks to Tim Clark and Timothy Wizinsky. With a name like Skloot I’m allowed to stumble on people’s last names.