Big Star: The Unluckiest Band In America.

*** TRANSCRIPTION COMPANY BOUNDARY ***
..DATE:
20100202
..PGRM:
Fresh Air
..TIME:
12:00-13:00 PM
..NIEL:
N/A
..NTWK:
NPR
..SGMT:
'Henrietta Lacks': A Donor's Immortal Legacy

TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross.

Our interview today is about science, ethics, class and race. One of the
obstacles that used to face medical researchers was the difficulty of finding
human cells that would keep multiplying in the culture of a Petri dish. That
problem was solved in 1951, when one doctor took cells from the cervix of a
poor African-American woman who was dying of cervical cancer.

Her cells were unique. They multiplied and multiplied and have been used in
tens of thousands of research studies. They were essential in developing the
Salk polio vaccine, as well as drugs for treating herpes, leukemia, influenza
and Parkinson's disease. They even went up in the first space missions so
scientists could study the impact of zero gravity on human cells.

This line of immortal cells that have contributed so much to science is called
HeLa cells, named after Henrietta Lacks, the woman from whom the original cells
were taken without her knowledge. The He in HeLa is for Henrietta; the La is
for Lacks.

It took 25 years for her family to find out about HeLa cells. Her daughter
Deborah wondered: If our mother's cells have done so much for medicine, how
come her family can't afford to see doctors?

My guest, science journalist Rebecca Skloot, has written a new book about this
amazing story called "The Immortal Life of Henrietta Lacks."

Rebecca Skloot, welcome to FRESH AIR. What makes Henrietta Lacks' cells, the
HeLa cells, so special, so different from other cells?

Ms. REBECCA SKLOOT (Author, "The Immortal Life of Henrietta Lacks"): It's sort
of a mystery, in a sense. There are a few things we know for sure about them. I
mean, one of them is that they were first immortal human cell line ever to grow
in culture.

Scientists put them in culture in 1951, and they just never died. They kept
growing and growing and growing. And scientists had been trying to do that for
decades, and it had never worked.

She had – when she went to the hospital, she had a tumor on her cervix that was
about the size of a dime. And within six months, nearly ever organ in her body
was taken over by tumors. So her cancer grew incredibly fast in her body.

When scientists put them in culture, they just took off. They doubled every 24
hours, and they sort of piled on top of each other and grew in these enormous
sort of quantities that no cells had never done before.

GROSS: So the cells that the doctors took that have reproduced so much and have
been used in so much research, those were her cancerous cells that they took?

Ms. SKLOOT: Yes. Yeah, they took both. They took a small sample of her tumor
without her knowing, and they took a small sample of her normal tissue. And
this was part of a larger study. So to sort of put it into historic context, in
1951, when she went to the hospital, the Pap smear had just recently been
invented. Very large numbers of women were dying of cervical cancer. And the
Pap smear had reduced those numbers a bit, but no one really knew exactly how
to diagnose cervical cancer yet.

So doctors would do a Pap smear, and sometimes they would look at it and say,
oh, that's just, it's a bacterial infection, and they'd give a woman
antibiotics when she actually had cancer. Other times, they'd look at it and
say, oh, that's cancer and give a woman, you know, do a hysterectomy on a woman
who actually only had an infection.

So this doctor at Hopkins decided that if he could just grow cervical cancer
cells and normal cervical cells in culture, you could look at them under the
microscope and establish this is what a cancer cell looks like, this is what,
you know, a normal cell looks like. And it would help figure out this diagnosis
issue.

So he took samples from her normal tissue and from her tumor, and the normal
ones died very quickly in culture. They never really went anywhere. So it was
the cancer cells that really took off.

GROSS: Well, it's amazing that they can use cancer cells for medical research
since cancer cells are so different from healthy cells. So is that a problem
for the research? How can they use cancer cells?

Ms. SKLOOT: You know, there are things that are completely abnormal about HeLa
because they're cancer, but there are a lot of things that cancer cells do that
normal cells do. You know, they metabolize. They create energy. They, you know,
they get infected by viruses. So there's a lot that you can study that applies
to all cells using cancer cells.

The other big thing is that they're used almost like factories. You can infect
them with a virus or various other things that you want to produce, and they'll
grow those viruses in large quantities.

And they're also sort of – they're like a baseline. They're almost treated like
the white lab mouse or the fruit fly. Part of why they're so useful is that
they just grow in these massive quantities.

GROSS: Henrietta Lacks, her story is so interesting. I love the way you balance
the personal story and the science story in your book.

Henrietta Lacks was a poor, African-American woman who, in 1951, when she had
cervical cancer, she'd never heard the words biopsy or cervix before. And I was
kind of shocked to read a little bit about her medical story.

First of all, at Johns Hopkins University, where she was, she was in the
colored ward. There was a colored ward in 1951.

Ms. SKLOOT: Oh, yeah.

GROSS: And another thing I found kind of shocking was the radiation treatment
that she got, and I want you to describe that treatment.

Ms. SKLOOT: Yeah, the treatment was – that was the standard for the day, you
know, regardless of where you went for your treatment, pretty much, was that
the doctors would take tubes of radioactive material called radium and
literally sew the tubes to the surface of the cervix.

They would put them in little pouches. And, first, they would stick a few tubes
up inside the cervix, and then they would sew the pouches full of these tubes
to the outside, and they would leave them there for a few days, just sort of
emitting radioactive material inside of you. And, you know, this is the kind of
stuff where it's the radioactive material that glows. It's that kind of
radioactive material. And so it would essentially burn off the cancer, and then
they would remove the tubes and send you home.

GROSS: Was this a standard procedure then, or was this considered experimental?

Ms. SKLOOT: Absolutely standard. And this is one of the interesting things,
it's sort of an important point in the history of Henrietta Lacks. Her story
has often been held up as one of, you know, these sort of, you know, awful,
white doctors who did these really kind of vicious treatments to her and stole
her cells without telling her because they knew they'd be valuable, and that
really wasn't the case at all.

They were taking cervical cancer tissues from any woman who walked into Hopkins
with cervical cancer, and this was absolutely the standard treatment. And, in
fact, it was considered the sort of top of the line.

But, you know, there are other questions about, you know, this was a colored
ward. This was the Jim Crow era. You know, the reason she was at Hopkins in the
first place was because she was black, and there were not really many other
hospitals around where she could have gotten treated. She also had no money,
and Hopkins was a charity hospital. So she was in the public wards. And, you
know, there have been plenty of studies that have looked at how segregation
affected health care delivery.

So she did get the standard care of the day, but she was definitely sent home -
many times after her radiation treatment, she came back complaining of various
pains and was sent home and sent home and sent home until she eventually
refused to go home and said no, put me in the hospital. And at that point, her
cancer had spread so much, and there probably wasn't anything the doctors could
have done either way. But, you know, the question of how race played into her
health care is a hard one to answer.

GROSS: So you were able to tell this story about Henrietta Lacks, her cancer,
her cells, how her cells were used scientifically, in part because you met
members of the family.

Once you decided that you were fascinated by the story, you tracked down the
Lacks family. Of course, Henrietta Lacks was dead, but her daughter Deborah was
alive. So how did you make contact with Deborah, and how old was she when you
did?

Ms. SKLOOT: She was in her early 50s when I finally got in touch with her, and
she was very hard to find, and I realized later because she didn't want to be
found. But I eventually tracked down a scientist who had her contact
information, essentially, and he was the only scientist at that point who had
done anything to sort of thank the family for the HeLa cells. He had organized
a conference in Henrietta's name.

So he essentially grilled me for about three days over the phone just to find
out what my intentions were and to basically see if I was someone he was
willing to put in touch with the family.

GROSS: As opposed to what? Were they used to people getting in touch with them
for questionable reasons?

Ms. SKLOOT: Yeah, well, you know, I mean, in the – I didn't know it at the
time, but I came along in the '90s, and at that point, I was just another of a
very long line of – essentially of white people coming who wanted something
having to do with the cells. So scientists coming saying we want to take
samples from you to do research to learn more about the cells, journalists
coming and wanting to, you know, essentially tell the same story over and over
and over again, this, you know, cells taken from this woman without her
knowledge lived all these years, sort of isn't it amazing.

That story had been repeated over and over again in the media. And the reason
why it was so upsetting for the family is because no one ever told them
anything. You know, the first time the family heard about the cells was 25
years after she died. No one had ever told them these cells had grown, and yet
they're all over the world being used in this research. And the way they
learned about it was essentially a scientist called them wanting to do research
on the family to learn more about the HeLa cells.

This was the very early days of gene mapping, and they thought if they could
take some samples from her kids, they could use their genes to study HeLa cells
more.

So Henrietta's 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, she's alive in the laboratory. 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, which wasn't what the scientist said. But, you
know, the scientist said we need to look at your HLA markers and your this and
your that, and he had no idea what the science was.

He actually, you know, to him, the only cell he'd ever heard of was, you know,
the kind in the jail where one of his sons was at that point. And Deborah was
in her 20s, and she had feared her 30th birthday her entire life because she
knew her mother died in her 30s, or she was diagnosed at 30, died at 31.

So she knew her mother died right around 30, and she figured the same thing
would happen to her. No one had told her why her mom died. So it made perfect
sense for doctors to be calling, saying it's time to test you for this thing
that killed your mother.

So the scientists came and took samples from the family and left, and the
family waited for their cancer results. They would call the Hopkins switchboard
and say we need our cancer results, and the, you know, receptionist at Hopkins
had no idea what they were talking about, and the scientists were doing
research on the cells, and they would then send them to other scientists.

And so the family got sucked into this world of research that they didn't
understand, and it was all pretty terrifying for Deborah. She didn't know if
this stuff that they were doing hurt her mother. You know, they would say
things like we sent this stuff to the moon, and she would think, like, was that
okay for her mom? And when they injected them with chemicals and radiation, she
was very worried that this was doing something very damaging to her mother's –
either her mother's spirit or actually her mother might feel the pain of this
stuff. So there was a lot of fear surrounding that.

GROSS: So were you in a position to explain to Deborah what this was about once
you found out?

Ms. SKLOOT: Yeah, eventually. I mean, you know, once we – once she really did
start to talk to me, after about a year, one of the ways in which I was able to
kind of finally win her trust was to say, look, I want the same thing you want.
I want to find out what happened. I want to tell her story.

You know, Deborah, the one thing I got from our first phone call was that she
was desperate to know who her mother was. Deborah was two when her mother died.
So she had no memory of her and had spent a lot of her life really fixated on
wanting to meet – wanting to understand her mother's story and, you know, did
she like to dance, and what was her favorite color. And, you know, she just –
she grew up with a lot of men. She was very badly abused, and she held up her
mother as this person who could have saved her.

And so, I knew that she really wanted to know about her mother. So I would go,
and as I learned stories about her mother by interviewing distant relatives and
finding people she grew up with, I would call and leave messages on Deborah's
voicemail saying, you know, hey, I talked to your, you know, cousin Cliff(ph),
and he told me this great story about your mom, you know, and they used to do
this.

And so eventually, she called me and said okay, fine, I'll talk to you but, you
know, only if you don't hide anything from me. And I said hey, you can come
with me, if you want, on my research trips. I will share with you everything I
learn. I'm, you know, I'm not trying to hide anything from you.

So then, you know, she really did learn about the cells as we were going, you
know, as we were doing this research. We'd go into labs, and she would –
scientists would explain to her, you know, the basics of the cells. So she
really did eventually learn about it.

GROSS: My guest is science journalist Rebecca Skloot. Her new book is called
"The Immortal Life of Henrietta Lacks." We'll talk more after the break. This
is FRESH AIR.

(Soundbite of music)

GROSS: My guest is science journalist Rebecca Skloot. Her new book is called
"The Immortal Life of Henrietta Lacks."

Let's get back to Henrietta Lacks, who had a body riddled with cancer, and her
cancer cells have been reproduced by scientists, and those cells have been used
in so much medical research for decades.

It's quite ironic that the – ironic isn't exactly the word. The family didn't
find out about this until 25 years later, and the family is in a position where
they can't always afford to go to a doctor. Some of them have, correct me if
I'm wrong, some of them have health insurance; some of them don't. They've
never seen a penny. They've gotten very little recognition for what their
mother contributed. Legally are they owed anything now?

Ms. SKLOOT: Legally? No, in part because it's not clear who would owe them
anything. You know, the cells were grown at Hopkins by George Gey, who then
gave them to everyone who wanted them for free. He just gave them out because
this was this unbelievably exciting development, you know, in research. He was
like here, everybody, do great things with these.

And then it was down the road, you know, someone started the first company
that, you know, this was the first company to ever sell human tissue or human
cells. So somebody started a company selling them because scientists, you know,
needed that. And that led to, yeah, multibillion dollar corporations now.

So it's impossible to calculate how much money has been made off of them. But
no, historically speaking, there have been other cases where people have found
out hey, someone's using my tissues for research, and they've made, you know,
in one case, a scientist patented someone's cells and sold the – licensed the
patent for millions of dollars, and the man sued, and the court said no, people
don't have the right to profit off their body because the fear is that it would
interfere with science.

GROSS: This might seem a little arcane to people, you know, whether this
woman's cells should have been paid for, what kind of acknowledgement she
should get. But you point out in your book, we all have cells that are stored
someplace. I never really thought of it that way, but is that true, we all have
cells that are stored someplace?

Ms. SKLOOT: Pretty much. It's hard to say everybody does. But yeah, the
majority of Americans at this point certainly have, very likely have their
tissues on file somewhere.

GROSS: How, like why?

Ms. SKLOOT: Well, so there are a lot of different ways that this happens, and
one of them is through, you know, you go to the doctor, and you get a biopsy.
In a lot of cases, you know, you sign a consent form that says the doctor can
dispose of this however, you know, he or she sees fit. Some cases it says you
can use this for educational research or research purposes. And that basically
means they can take them, store them and do whatever they want with them.

And in a lot of cases, so any child born in the U.S. after – since the 1960s,
it's a law that you have to – all newborns have to be tested for genetic
diseases. So everybody gets a little, you know, blood prick, and they test you
for diseases, which is great. We need that. It's saved a lot of lives. But then
a lot of those samples are often saved. So pretty much any child born since the
'60s has gotten – has their stuff on file somewhere. Circumcision samples are
often saved, you know...

GROSS: Where is all this stored?

Ms. SKLOOT: Oh, there are banks and banks and banks, and there are so many
difference places. Some of them are for-profit, some of them are non-profit.
Some of them are in hospital basements. The range is really huge. Some of them
are just these enormous factories, and the others is, like, some guy's
basement, you know, with a bunch of vials in them.

GROSS: And are most of these cells just kind of sitting there, as opposed to
being used for research?

Ms. SKLOOT: We don't really know. A lot of them are being used in research.
Some of them probably aren't. This is the thing. It's just this is something
that's been sort of building for a long time, and it's only recently scientists
are starting to sort of say wow, you know, these fetal blood samples are this
incredibly valuable resource. We should create these banks and sort of start
maybe being a little more organized about it.

It's interesting, there's actually – over Christmas, a lawsuit - there's a
lawsuit, actually two of them, one in Texas and one in Minnesota, where some
families found out that their children's fetal blood samples had been stored
and were being used in research, and they sued the states.

So over Christmas, a court actually ruled in favor of these families in the
state of Texas, and the state of Texas had to destroy over 5.3 million samples
taken from kids, you know, and stored for research without their knowledge or
their parents’ knowledge.

And that is huge. That's never happened before. No court has ruled in favor of
the tissue, you know, quote-unquote, “donors” in any case like this, and having
the result be we're going to destroy all this stuff very sort of quietly.

I mean, literally, I don't – very few people even seem to notice that this
happened is a bit disturbing, I think, on the larger scale for scientists,
right. So one of the big fears and one of the reasons this whole issue of how
should we deal with consent and property rights and those things with cells,
one of the reasons it hasn't been dealt with for so long is because it's so
complicated.

And what my reaction to that Texas thing was, I saw that and thought uh oh, if
we start having state-by-state rulings like this, where one state destroys 5.3
million in one part of a state, you know, and state by state we start having
these things happen, it's sort of preempting this larger discussion of what to
do with the samples and how to do this in a way that isn't going to hurt
science but will also protect the people.

GROSS: Meanwhile, getting back to the HeLa cells, the cells that reproduce so
well that so many scientists have used for research, the cells from Henrietta
Lacks, the He for Henrietta, the La in HeLa from Lacks. These cells are now
actually contaminating a lot of experiments. What's going wrong?

Ms. SKLOOT: Yeah, well, this started in the very – essentially in the
beginning, and no one knew it. So, you know, when scientists first grew HeLa
cells, when George Gey first grew HeLa cells, people thought he had just
discovered the recipe and the sort of formula for doing it. And so, everyone
started taking samples from themselves and their kids and their patients and
really quickly created this huge library of samples, which was being used in
all sorts of important research.

And in the '60s, at some point, one scientist basically realized these were
pretty much all HeLa cells, and this was an enormous shock to the field. This
was a big controversy. It meant potentially, you know, some people were
potentially fabricating data, and there was millions of wasted research
dollars.

And the thing is that HeLa cells can – they can float on air – dust particles
in the air. They can travel on unwashed hands. You know, if you use a pipette
to suck cells out of one dish and put them in another, and then you reuse that,
you can transfer HeLa cells other places. And because HeLa cells are so hardy,
they will essentially outgrow any cell that they encounter, and the other cell
will die because it can't keep up, and HeLa cells take over.

So what, you know, scientists thought they had all of these samples, and it all
turned out to be HeLa. And, you know, it started this decades, basically
decades-long quest to try and – from a few scientists trying to clean up the
contamination problem, and it's still happening. I mean, HeLa cells are still
contaminating cell lines all over the place.

GROSS: Rebecca Skloot will be back in the second half of the show. Her new book
is called "The Immortal Life of Henrietta Lacks." I'm Terry Gross, and this is
FRESH AIR.

(Soundbite of music)

TERRY GROSS, host:

This is FRESH AIR. I’m Terry Gross, back with science journalist Rebecca
Skloot, author of the new book, "The Immortal Life of Henrietta Lacks."

Lacks was a poor African-American woman dying of cervical cancer, when in 1951,
her doctor cultured some of her cervical cells and found they kept multiplying
in the Petri dish. They were the first human cells to keep multiplying, which
is why they’ve been used in tens of thousands of research experiments. These
cells named HeLa cells, were essential in the development of the first polio
vaccine and many medical treatments.

HeLa cells are still being used for research. But the cells were taken from
Lacks without her consent or knowledge, and her family didn’t even find out
until 25 years later. This story had a personal connection for Rebecca Skloot,
relating to her father Floyd Skloot, an award-winning writer.

Your father, in 1988, had a viral infection that caused brain damage and it
immobilized him. He was in a clinical trial after this viral infection. And
since this relates so well to the subject that you’ve been writing about,
except it's much closer to your life history, what was the study that your
father was involved in and did he even know he was in a study?

Ms. SKLOOT: Yeah, he did. He volunteered for the study. So he had this - he got
this, yes, viral infection that causes brain damage and no one knew what was
really wrong with him at that point. There were, you know, it was the late '80s
and people were like maybe this is some strange form of AIDS we haven't seen,
or maybe it’s cancer, and they were throwing out all these scary diagnoses. And
eventually he got lumped under the umbrella of chronic fatigue syndrome, which
was at that point, where they were putting everyone that they couldn’t really
explain what was wrong with them.

You know, he seems, you know, he can't move. He's got chronic fatigue syndrome.
So there was this study that was looking at this particular drug to see if it
would help people with quote/unquote "chronic fatigue syndrome." So he enrolled
in it and there were a lot of sort of ethical questions about it in the end.
And, you know, I was 16. I had just gotten my driver's license and he was
unable to drive because of his brain damage, so I would drive him, several
times a week, to this hospital where he'd get these infusions of either a
placebo or the drug and I would just sort of hang out and watch him and these
other patients being used in the study. And at the time, you know, it was this
incredible lesson for me as a kid - and I don’t even think I realized I was
learning it at the time - of like the hope of science and, you know, really
thinking this thing was going to fix my dad.

You know, he went from a marathon runner to being this guy who couldn’t move -
almost overnight. And that was the same year I first learned about the HaLa
cells. So I was 16 and in this basic biology class and my teacher, you know, as
all biology teachers do at some point, they say oh, these are the first human
cells, immortal cells ever grown in culture and they're still alive today even
though she died in '51. Like people learn the basics of this in biology. And
for some reason my teacher knew her name. He said, you know, her name was
Henrietta Lacks and she was black.

And I was like, why do we know that about her? Well, what else? And my first
question was: Did she have kids? What did they think about this? You know, do
they know about this? And I think that the reason why I asked those questions
is because I was in the midst of that myself, and having my own parent used in
research and sort of feeling the all the emotions that went along with that. So
I, you know, immediately went up after class and asked my teacher: so, you
know, what do they know about her? Tell me more. And he was just like, sorry.
That's it. That's all there is. And that sort of planted the seed that, you
know, all these years later became my book.

GROSS: With your father's story, like watching him from the age of 16 have this
mysterious disability that radically transformed his life, and then watching
him slowly try to put the pieces back together - to the extent that he was
capable of doing that - how did that affect your sense of the vulnerability and
the resilience of the human body?

Ms. SKLOOT: Oh, I'm sure it affected it a lot. Probably more than I, you know,
than I ever have really thought about. And yeah, and I think part of it is it
also gave me a different appreciation for just illness in general and what a
transformative experience it can be internally, and sort of emotionally. And
he's a very different person now than he was before he got sick. You know, a
lot of people say this happens to people often when they go through really, you
know, difficult illnesses. And he's a much warmer guy. He's a much happier guy.
He realized how important, you know, people in his life are and things. So I
think that, more than anything, that's something I got out of it is how
transformative it can be to sort of fight through something like that.

You know, and I saw that with Deborah. I mean, you know, Deborah, she was -
watching her go through this sort of arch of learning about her mother and the
traumas of all of that and then coming out the other side was so inspiring. I
mean she was - she, you know, the strongest woman I've ever met in my life. You
know, she had no education really and she had a very difficult time reading, so
everywhere we'd go she'd carry this little tattered dictionary around with her
and look up words that scientists said to try to follow what was going on.

I mean she so badly wanted to learn things that, you know, it was really
inspiring to watch. And then, you know, she did come out the other side,
eventually, feeling very differently about the cells and really embracing the
great things that they did for science. And, you know, so the transformation
that trauma can cause is really amazing.

My guest is science journalist Rebecca Skloot. Her new book is called "The
Immortal Life of Henrietta Lacks."

We'll talk more after a break.

This is FRESH AIR.

(Soundbite of music)

GROSS: My guest is science journalist Rebecca Skloot. Her new book is called
"The Immortal Life of Henrietta Lacks." It's about the first line of human
cells to keep multiplying in Petri dishes. These cells, known as HeLa cells,
have been used for tens of thousands of experiments. The original cells were
taken from the cervical tumor of Henrietta Lacks who died in 1951. The family
didn’t find out about these cells until 25 years later. Skloot got to know
Lacks' daughter, Deborah, while researching the book.

You write in your introduction, that about while you were trying to make sense
of the history of cell culture and the ethical debate surrounding the use of
human tissues in research, you were accused of conspiracy, slammed into a wall
both physically and metaphorically, and that you eventually found yourself on
the receiving end of something that looked a lot like an exorcism. So choose
the best story from those examples and tell us what happened.

(Soundbite of laughter)

Ms. SKLOOT: There was actually a moment during the research process, and
Deborah and I were traveling together and learning various things about the
cells, where someone actually performed essentially like a faith healing -
laying on of hands - laying hands on her to remove the cells from her. You
know, this sort of take the burden of these cells from this woman. Lord, she
can't take it anymore. And I was, you know, the reporter sitting in the room
with my notebook just sort of scribbling notes going, oh my god, I've never
seen anything like this. And, you know, they're screaming and praying and
singing and then all of a sudden, you know, he said take these cells from this
woman, and he turned to me and he put his hands on either side of my head and
said, give them to her.

(Soundbite of laughter)

Ms. SKLOOT: And I just went, oh. You know, as a journalist, this is not
something you'd necessarily expect and, you know, I'm not a religious person
and I'd never encountered anything like that. And it was such a powerful moment
for so many reasons, which I'll leave to people to read in the book. But for
me, that was actually the moment when I knew I had to be in the story.

I had been doing all this research for years and, you know, I would come home
from these research trips and I would tell my friends and my family these
stories and they kept saying, you have got to put this in the book because the
family's reaction to you is the thing that tell - that illustrates how really
damaged they’ve been by this. And how are you going to show this any other way?
And I was like no, no, this is not my story. This is their story. I actually
have issues with writers who put themselves in books where they don’t belong.
So I was like no, it is not my story. And I just refused for years. My agent
would harass me about it, and then that moment when he said, give them to her,
I just went, oh god, I have to be in the book.

You know, and I mean it wasn’t like my first reaction, but that I really - I
realized in that moment that I had no choice because I had really become
essentially a character in the book and that I realized it would sort of be
dishonest to leave myself out.

GROSS: So did you or Deborah feel any different after this faith healer?

Ms. SKLOOT: Oh, she was utterly transformed, yeah. It was pretty incredible to
watch. And not only was she really released from so much that was so much of
the upset, or so much of the anxiety and fear that she was going through, but
she was also completely transformed in her relationship towards me. You know,
she didn’t trust me. Even when she started talking to me, she was terrified
that I was going to do something to her. She would have these moments where,
for long periods, she was fine, and then she would have moments where she would
think, maybe Johns Hopkins sent me and I'm going to take her somewhere and take
her cells.

And, you know, she would have these kind of paranoid moments that out of
context sounded a little crazy. But when you look at them in the grand scheme
of her life and think okay, someone came to her, you know, 25 years after her
mother died and said hey, part of your mother is still alive and there's enough
of it that if you put her cells in on end they'd wrap around the Earth three
times. You know, they'd weigh more than 50 million metric tons. And that was
true, you know, and so what’s too strange?

Her entire barometer for what sounded possible was just completely off kilter
because of the things that were done with the cells. And so she would have
these moments of utterly fearing me. I wasn’t allowed to ride in her car, so we
would go on these trips and take two cars and I would follow her. And after
that moment that everything changed in our relationship. She actually - that
was the day she first let me get in her car and so I think that...

GROSS: Why, because part of her was now in you?

Ms. SKLOOT: Yeah.

GROSS: In her line?

Ms. SKLOOT: Yeah.

(Soundbite of laughter)

Ms. SKLOOT: Well, right and I had yeah, like part of the cells was in me. And I
think also because in that moment, one of the things that, you know, the person
who was performing this faith healing - laying on his hands, I guess - one of
the things he kept saying is you’re not alone in this. She kept saying, I can't
take this by myself; I can't do this. And he said, you’re not alone and then he
did that, you know, sort of transferring the cells to me. And I think part of
it was realizing that yeah, I was actually there and in this really long hall
with her.

You know, I mean this book took 10 years to write and, you know, I think that
was the moment she realized I wasn’t going anywhere for real and that, you
know, and that I wasn’t - that I was maybe, you know, not going to hurt her.

GROSS: So when the cell were quote, "transferred" to you by the faith healer...

Ms. SKLOOT: Mm-hmm. Uh-huh.

GROSS: Did you feel anything transformative?

Ms. SKLOOT: In some ways, yeah. I mean this whole all this religious, you know,
the faith and spiritual stuff in the story it’s pretty heavy. You know, her
family really, some members of her family believe that Henrietta's the Lord's
first immortal being, you know, chosen and brought back to life as these cells
to cure diseases and, you know, and she sometimes causes problems. You know,
Deborah always says the whole contamination thing was Henrietta getting back at
scientists. She's like, you know, you don’t piss Henrietta off. She will sic
HeLa cells on you. You know, she'll have them come and destroy your lab.

But all that was very hard for me to kind of wrap my head around initially. I
was raised; I have no religious background at all in terms of that stuff. So,
but it was transformative. In a lot of ways what - the thing that was building
in me, which became even in some cases in some way more powerful right then was
the weight of the story, the responsibility that I felt to tell this story, and
to get it right. To not, you know, to write it in a way that people will want
to read and will get through and all of those things, and to just get it all
out of my head and on to the page, I was, I felt such a burden of that.

And in a lot of cases, I was scrambling. You know, Henrietta's generation was
in their 80s and 90s as I was doing the research for the book. And in some
cases, her, you know, some of her immediate relatives would die right before I
was supposed to interview or right after I interviewed them and I always had
this sense that I was scrambling to keep up to get this history as it was
disappearing. And I - especially after that moment like, there was something
about that where I was like okay, this really, I am doing this. I'm writing
this book. I must do this right and, you know, do it justice and I would get
terrified.

Like, there were moments when I would travel or something where I would think,
if something happens to me what’s going to happen to this book? Like - and I
would call - I have this, one of my best friends is a writer, he's with the
Washington Post- and I would call him, sometimes like, middle of the night and
say okay, I'm going on a trip. If anything happens to me, my interview
transcripts are in this box.

(Soundbite of laughter)

Ms. SKLOOT: My tape recordings are here, and you need to swear to me you’re
going to write this book. If I die write, this book, you know, and my dad too.
Like, and I had assigned them sections. Like, okay dad, you write this part.
You know, my friend's Mike. Mike, you write this part and you guys have to
swear to me you’re going to do this. And I like, I had that kind of, you know,
sort of...

(Soundbite of laughter)

GROSS: So you’re kind of amazed that you survive and the book is published.

Ms. SKLOOT: Yeah, in a lot of ways. And I was also terrified something would
happen to the research materials. My poor boyfriend had to move these boxes.
Every time we moved or traveled anywhere I brought my research with me because
I thought, I was afraid something was going happen. So I would go to this house
in the middle of nowhere to work on it sometimes and my boyfriend - we couldn’t
mail the boxes because I was scared something would happen to them. I would let
the movers touch them. And so my boyfriend would lug, you know, and this was
pre-digital, so we're talking, you know, file cabinets full of folders and
books and books and tapes. And we would pack them all into this car and then we
couldn’t leave it. I mean I was so protective of this stuff. And really a lot
of it, I mean I had always felt really that it was so important to tell the
story, but something about that moment with that faith healing, it became a...

(Soundbite of laughter)

Ms. SKLOOT: Yeah, it became much bigger than me, I think.

GROSS: Since you raised so many ethical questions about medical research in the
story and informed consent, were there any ethical questions that entered into
your relationship with Henrietta Lacks' daughter Deborah?

Ms. SKLOOT: Oh, absolutely. And in a lot of ways, I think this book is just as
much about journalism, you know, and the ethics of telling people's stories as
it is about science. You know, they're so many questions about, you know, do
you - who has the right to tell your story and do you own your own story? And,
you know, they're a lot of questions about that. You know, one of the first
questions that - once Deborah's family agreed to talk to me - the first
question that they asked was: What are you going to pay us? You know, here you
are yet another white person who showed up at our house wanting to do something
that you are going to eventually profit off of that we might get nothing out
of.

You know, at the time I was in my 20s. I was paying for all my research using
student loans and credit cards and I was like, I don’t even know if this
thing's ever going to get published. And, you know, but I said to them, you
know - and there is a code of ethics in journalism that says, you know, you
don’t pay people for their stories. It changes the relationship. It becomes a
business partnership, not a sort of journalistic endeavor. And I felt like, you
know, I felt like I couldn’t pay them for their story. But at the same time, I
didn’t want to be another person who just sort of came along, got stuff from
them and left.

So what I told them in the beginning is if, you know, this thing ever actually
happens, I'm going to create a foundation, a Henrietta Lacks Foundation that
has a scholarship fund and I will put some of my money into the scholarship
fund from the book and it will be open for any scientist, you know, university,
corporation, you know, anybody in the world can donate to this thing and it
would be a scholarship fund that would help send, essentially educate any of
the descendants of Henrietta Lacks and, you know, others in similar situations.
So, you know, when I said this I had no idea what I was getting myself into. I
didn’t know how you'd create a foundation or a scholarship fund, but I did. I
did it. And so the foundation actually just went live.

And my hope is that, you know, and Deborah was, this was something that was
very important to Deborah. She came to realize as were going through this whole
book process that one of the biggest problems within the story was that she
didn’t have an education. So she came to a point where she realized if she had
just been able to, you know, ask the right questions to the scientists and if
she had had a little more exposure to science - even on a basic level - she
might not have been so scared and the stuff might have not been so traumatic
for her. And she might have just been able to say at some point hey, wait a
minute, this isn't clear to me, you know, and just to sort of be comfortable
questioning things a bit more.

So for her, one of the big important elements of this is, you know, she wants
the future Lacks generations to be educated. She does not want them to go
through what she went through. You know, carrying her dictionary around trying
to understand something so scary to her, and so I felt like that was what I
could do for that. But then, you know, there were a lot of other ethical issues
that I sort of grabble with in the book, about telling the story. And in the
end that's why I'm in it, because I felt like if I wasn’t then that would be
journalistically unethical, in a sense.

I felt like I had to show the impact I had on this family, which, you know, I
put them in some really hard situations that had some pretty bad effects on
Deborah in the moment. I think in the end it was all good for her. But, you
know, there were some pretty bad things happened, and so I felt like that all
had to be in there as, sort of just to be upfront about what was going on in
the story and my role in it.

GROSS: Rebecca Skloot, thank you so much for talking with us.

Ms. SKLOOT: Thank you so much for having me.

GROSS: Rebecca Skloot's new book is called "The Immortal Life of Henrietta
Lacks." You can read an excerpt on our Web site, freshair.npr.org.

Coming up, rock historian Ed Ward tells the story of the band with the worst
luck in American rock history.

This is FRESH AIR.

(Soundbite of music)
..COST:
$00.00
..INDX:
123232331
*** TRANSCRIPTION COMPANY BOUNDARY ***
..DATE:
20100202
..PGRM:
Fresh Air
..TIME:
12:00-13:00 PM
..NIEL:
N/A
..NTWK:
NPR
..SGMT:
Big Star: The Unluckiest Band In America

TERRY GROSS, host:

The statement, usually ascribed to Peter Buck of REM, that only a thousand
people bought the Velvet Underground's albums in the 1960s — but every one of
them started a band — also holds true for a Southern band whose albums in the
1970s sold even fewer copies than the Velvet's, but whose posthumous reputation
is nearly just as large. Rhino Records has released "Keep an Eye on the Sky," a
four-disc collection of recordings, demos, and outtakes by Big Star, as well as
an expanded version of "I Am the Cosmos," a collection of recordings by
founding member Chris Bell.

Today, rock historian Ed Ward tells the story of the band with the worst luck
in American rock history.

(Soundbite of song, "Way Out West")

Mr. ALEX CHILTON (Singer, Big Star): (Singing) She's a schemer and she makes me
mad. But I love her a lot, those lonely nights. I was in a big room, playing my
things.

Oh, I wish you were here. She can be so kind when she's not trying to hide. She
tries not to love me but she knows she can't. And why don't you come on back
from way out west.

ED WARD: Big Star was almost named the Sweden Kream. Taking a break from
recording at Ardent Studios in Memphis one evening, the four band members, Alex
Chilton, Chris Bell, Jody Stephens and Andy Hummel were standing outside
talking about what to name this group which had suddenly come into being. There
were two buildings across the street. One was an ice cream shop, the other a
Memphis grocery chain with a big red star as a logo.

Bell, Stephens, and Hummel were school friends, and Chris and Jody worked at
Ardent at night, learning how to run a recording studio. They were rabid
anglophiles; Chris often told his brother he'd been born in the wrong country
at the wrong time and should be leading a band like the Who or the Kinks.
Certainly they wrote some interesting songs, and at one point, John Fry, one of
the owners of Ardent, went to New York with a tape they'd made, only to have it
turned down being as too derivative of the Beatles.

Into this situation came Alex Chilton, who, as a 16-year-old, had tasted major
success as the front-man of the Box Tops, whose hits "The Letter" and "Cry Like
a Baby" had given him an education in how to be ripped off by your record
company. He'd used Ardent for some Box Tops sessions, and now that he was free
of his contract, he dropped by to see his old friend Chris Bell. Soon, he was
at Ardent at night, too, and writing songs with Chris. They were good.

(Soundbite of song, "When My Baby's Beside Me")

Mr. CHILTON: (Singing) Don't need to talk to my doctor. Don't need to talk to
my shrink. Don't need to hide behind no locked door. I don’t need to think.
'Cause when my baby's beside me, I don’t worry. When my baby's beside me all I
know. When my baby's beside me, I don’t worry. When my baby's beside me all I
know.

WARD: The best Big Star songs are a distinctly American take on the kind of pop
the British Invasion had brought to this country, and far from the sort of
southern rock the Allman Brothers and others were doing in 1972, when Big
Star's ironically named debut, "#1 Record," was released on the new Ardent
Records label. Ardent did recording for Stax when Stax's studios were
overbooked, and with Stax being distributed by Columbia, Ardent, as a division
of Stax, was assured of blanket distribution.

But that's not what happened. A casualty of machinations within Columbia, "#1
Record" barely got distributed at all. It got a rave review in Rolling Stone,
but a rave review's not much good if you can't buy the album. Chris Bell, who'd
been working for years on this band, before Alex Chilton came along, was
devastated. To make things worse, his long-time girlfriend left him. Words were
spoken, fists flew, and by the time it was over, Chris was in a psychiatric
institution. Alex and the other two continued making demos, and a couple of
years later, in 1974, a second album, "Radio City," appeared; it was even
better.

(Soundbite of SONG, "September Gurls")

Mr. CHILTON: (Singing) September gurls do so much. I was your butch and you
were touched. I loved you well, never mind. I've been crying all the time.
December boys got it bad. December boys got it bad...

WARD: "September Gurls" would be a hit, but not for Big Star, and not for over
a decade, when the Bangles recorded it in a more pop-friendly world. Andy
Hummel threw in the towel and went back to school. Meanwhile, Chris Bell was
recuperating. Like Chilton, he was from a wealthy family, so it was relatively
easy for him to pack up with his brother and head to Europe for an extended
trip. He took with him two recordings he'd made, and was honored when Beatles
engineer Geoff Emerick mixed one of them for him.

(Soundbite of song, "I Am the Cosmos")

Mr. CHILTON: (Singing) Every night I tell myself, I am the cosmos. I am the
wind. But that don't get you back again. Just when I was starting to feel okay,
you're on the phone. I never wanna be alone. Never wanna be alone.

WARD: But he couldn't get any record companies to bite on "I Am the Cosmos" or
the equally-excellent "You and Your Sister," even after EMI had reissued the
two Big Star albums in England, so he went back to Memphis and took a job with
his family's restaurant management company while recruiting a band of young
kids to work with him. Coming home from a rehearsal late at night a few days
after Christmas, 1978, he went off the road at high speed and was killed.

Rumors persisted among the growing Big Star underground, though, that there was
a third album in the can, tracks cut in 1974 by Alex and Jody, who was still
working at Ardent as an engineer, and overseen by producer Jim Dickinson. There
was, in fact, and it was experimental, eccentric, and uncommercial — just what
the fans wanted.

(Soundbite of song, "Nighttime")

Mr. CHILTON: (Singing) At nighttime, I go out and see the people. Air goes cool
and hurrying on my way, and dressing so sweet, all the people to see. They're
looking at me, all the people to see. And when I set my eyes on you...

WARD: By the time the album — titled either "Third" or "Sister Lovers,"
depending on which version you bought — came out in 1978 on the tiny PVC label,
Big Star was history. Jody continued to work at Ardent, and Alex spent a number
of years washing dishes in a New Orleans restaurant. Eventually, however, the
band's reputation hit critical mass, and reissues became available. All those
kids who'd bought "#1 Record" and "Radio City" had bands now, and their music
was called power pop. Chilton emerged, reluctantly, to record some more and
produce the Cramps. He still wasn't a big star, but he was a legend.

GROSS: Ed Ward lives in the South of France and blogs at
wardinfrance.blogspot.com.

I'm Terry Gross.

(Soundbite of music)
..COST:
$00.00
..INDX:
123270136

Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.