This Podcast Will Kill You - Ep 70 Henrietta Lacks: HeLa, There, & Everywhere
Episode Date: April 6, 2021Of the many topics our podcast has covered in the past, from smallpox to scurvy, vaccines to birth control and beyond, one factor has linked nearly all of them: HeLa cells. These cells and the woman f...rom whom they were taken have often remained behind the scenes in the coverage of these topics, but they have nevertheless been absolutely fundamental in the development of technologies, the advancement of knowledge, and the discussions of ethics, ownership, and informed consent. In this week’s episode, we want to do more than acknowledge the contribution of Henrietta Lacks and her cells to the field of biomedical science. We want to explore what it is about HeLa cells and other cell lines that makes them ‘immortal’. We want to learn what Henrietta was like as a person. We want to ask how it was possible for her cells to be taken from her without her consent or knowledge. And we want to share the tremendous impact Henrietta and her cells have made and continue to make on our world in so many ways.For more information about the Henrietta Lacks Foundation, check out the website. See omnystudio.com/listener for privacy information.
Transcript
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I'm Clayton Eckerd.
In 2022, I was the lead of ABC's The Bachelor.
But here's the thing.
Bachelor fans hated him.
If I could press a button and rewind it all I would.
That's when his life took a disturbing turn.
A one-night stand would end in a courtroom.
The media is here.
this case has gone viral.
The dating contract.
Agree to date me, but I'm also suing you.
This is unlike anything I've ever seen before.
I'm Stephanie Young.
Listen to Love Trapped on the IHeart Radio app, Apple Podcasts, or wherever you get your podcasts.
I'm Amanda Knox, and in the new podcast, Doubt, the case of Lucy Lettby, we unpack the story of an unimaginable tragedy that gripped the UK in 2023.
But what if we didn't get the whole story?
been made to fit. The moment you look at the whole picture, the case collapsed. What if the truth
was disguised by a story we chose to believe? Oh my God, I think she might be innocent. Listen to
doubt the case of Lucy Lettby on the IHeartRadio app, Apple Podcasts, or wherever you get your
podcasts. Hi, I'm Aaron Welsh. And I'm Aaron Alman Updike. And this is, this podcast will kill you.
Yeah. Welcome. Welcome. Welcome. Welcome. Welcome. This
episode, I'm very excited about it because it's very different than our normal episodes.
It's very different. Can I be completely honest? I was really stressed out about it.
Same. Because it's so different than our normal episodes. But finally today, as I was like
organizing all my notes, I got really excited about it. Oh, good. Okay, good. I'm very excited
to hear what you're going to tell me. Yeah. I hope that you like it. I'm sure that I will,
Erin, come on. I'm very excited to learn all about what you're going to tell me today, Erin,
because I know very little about it. Well, and your nerves may have gone away, but mine are still
here, and I'm still nervous that I'm not going to do a good job. But you know what? Just it'll be
okay. It's okay. That we always feel that way and we just do our best, Aaron. That's true. That's true.
We do do our best. Yeah. What are we even talking about today, Aaron? I feel like the suspense has been
building. I know. I know. We are talking today about Henrietta Lax. Henrietta Lax. And her cells.
And herself. You may have heard her name in your intro bio class or in your cell bio class
or maybe in your class on medical ethics. Yeah. Maybe in the HBO movie that just came out.
There are tons of different ways that you may have heard about Henrietta Lax. And,
And we are going to kind of like try to cover a lot of those different ways or context in which you may have heard her name.
Yeah.
Including things like tissue culture and the ethics of informed consent.
And also like who was Henrietta Lax?
Yeah.
That's the part I'm most excited about.
Yeah, me too.
And there's a lot to cover.
So maybe we should begin where we usually do.
We should, which is always with a quarantini.
A quarantini.
Aaron, what are we drinking this week?
This week we're drinking Ambrosia.
Ambrosia.
The drink of the gods that confers immortality.
Immortality.
And we will learn so much more about what immortal means, hopefully.
I'm really excited to talk about it.
Yeah.
Okay, good.
Okay.
But first, what is in Ambrosia?
Well, of course, being in the Midwest, Ambrosia salad's like a Midwest thing, right?
I think so. Or is it a southern thing?
Maybe it's a southern thing. I feel like I've seen it here. Anyways, it's rum and coconut cream,
pineapple juice, orange juice, some grenadine. You blend it all up. So it's like an Ambrosia salad
in a glass with rum. Yeah. I think it's going to be better than like the actual Ambrosia fruit salad.
I hope so because I'm not a big fan.
You mean you don't like mayonnaise with your fruit?
Wait, is it mayonnaise?
I thought it was cool whip.
Oh, no, it is.
Well, it's not a cool whip.
It's actually sour cream, I think.
Oh, okay.
Just like, yeah.
But I think you could also include mayonnaise or cottage cheese or yogurt or cream cheese or pudding.
I'm on the Wikipedia page.
I was like, are you looking at a, you're looking at a recipe right now?
Well, anyways, we'll post the full recipe for that quarantini as well as our not.
Non-alcoholic placebo-reida on our website is podcast with kill you.com and all of our social media channels.
Yes, indeed. All right. What other business do we have to take care of?
Well, as always, we have a goodreads list and a bookshop.org link on our website.
We also have merch by incredible artists on our website. We have links to transcripts. We have non-alcoholic episodes.
So much, this podcast will kill you.com.
Oh, Erin, good job.
Thank you.
Everything.
I was like, is there anything?
I can't think of anything else.
I think that's everything.
All right.
Well, in that case, should we take a break and then get started?
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In 2023, a story gripped the UK, evoking horror and disbelief.
The nurse who should have been in charge of caring for tiny babies is now the most prolific child killer in modern British history.
Everyone thought they knew how it ended.
A verdict? A villain. A nurse named Lucy Letby.
Lucy Letby has been found guilty.
But what if we didn't get the whole story?
The moment you look at the whole picture, the case collapses.
I'm Amanda Knox, and in the new podcast, Doubt the case of Lucy Lettby, we follow the evidence and hear from the whole story.
people that lived it to ask what really happened when the world decided who lucy lettby was no voicing of
any skepticism or doubt it'll cause so much harm at every single level of the british establishment of this is
wrong listen to doubt the case of lucy lettby on the iheart radio app apple podcasts or wherever you get your
podcasts so let's start with what a cell culture is because a lot of people
that aren't you, Aaron, maybe have never used cell culture.
So cell culture essentially just means growing cells, any kind of cells, could be human,
could be other animals, could be bacteria, yeast, whatever, in some kind of artificial medium,
like in a bottle or a petri dish, something like that.
So we have cell cultures of all different kinds of cells.
in order to grow cells of pretty much any tissue type, you just need some basic environmental
conditions like a stable temperature, a nice pH, some kind of substrate, which might just
be like a petri dish, and then you need growth media, which is just a fancy word for fluid or gel
or something that has nutrients, vitamins, salt, sugars, so that cells can grow and thrive
and reproduce. So the use of cell culture in biology at this point is so,
so essential to the study of both basic science, like our basic understanding of cell biology,
and also to applied clinical research. We use cell cultures to understand underlying cellular
mechanisms that underlie all of life on planet Earth. But we also use them to study like new
drugs to see if they're toxic to cells, to understand the effects of radiation or viruses or
cancer on cell function. We use cell culture to grow viruses to make vaccines like the rabies
vaccine or hepatitis or chickenpox vaccines. And we also use cell cultures for a ton of what are
called biopharmaceuticals, which are things that cells produce that we can then use as
drugs like enzymes, proteins, antibodies that we use for cancer treatment or infectious disease
treatment. We produce hormones, clotting factors. So many things that people rely on every day
are only possible because of cell culture. It's unbelievable. It's really, it's amazing. It's like
hard to overstate how basic they are in like essential. Essential. Absolutely. I used
Gila and mouse macrophage cells as an undergrad to study like these different proteins
on plague bacteria to see which ones were involved in adhesion or invasion of the cells.
That sounds incredible.
My lab in my master's program, we used Vero cells, which are from an African green monkey
kidney, to test whether the viruses that we were finding in sea water were infectious.
Although I didn't do that because I could never keep my cells alive.
I just remember being so fascinated by when I was doing these assays by making sure that like, oh, are the bacteria actually infecting these cells?
And you would like put the flask under the scope and see everything.
It was, I like couldn't believe what I was seeing that like this incredible process that you read about, it was just I still can't get over it.
I can tell that you're getting little chills when you talk about.
getting little chills.
Okay, so, Erin, in our kind of history section, you'll be going through the history of how
Heela cells, which are the cells that were taken from Henrietta Lax, without her permission,
and used, and how big of an impact they've had on scientific knowledge.
But the question that I want to answer in this section is why were Henrietta Lax's cells
such a massive step forward in cell culture technology?
and what makes like the cell lines that we use for cell culture today so different than what was used before Heela.
Okay.
I'm very excited.
Oh my gosh.
It's like, it's pretty cool.
So before Henrietta laxia cells were taken from her and became what we now know of as Heila cells, scientists were still trying to grow mammalian and human cells from tissues, but they always died.
and usually after a pretty short period of time.
So you could run like one experiment and then you'd have to harvest more tissue or more cells and start all over.
So the reason that Heela changed everything is because Henrietta lax's cells didn't die.
They kept growing and replicating and continue to do so today like 70 years later.
And so Henriettalaxis cells became what is known as a cell line.
and a cell line essentially means cells from whatever, humans or other animals, insects, plants, bacteria, from any tissue that can be grown in culture indefinitely.
Why and how?
Yeah.
Okay.
So let's first understand Henrietta Laxis cells, the first cell line.
These cells came from a sample of tissue from cervical cancer.
And we already discussed in our HPV episode how cervical cancer develops as a result of HPV infection.
So I'll just ever so briefly like review that for anyone who didn't listen or forgot.
We know that high risk HPV strains have a couple of different proteins, E6 and E7, that integrate into our genome, like get into our DNA and turn off a few genes called tumor suppressor genes.
And what this does is it allows for cells to grow in an uncontrolled manner.
So all cells follow a very specific cell cycle as they grow and divide.
And they spend most of their time in a phase called interphase, where they grow and also replicate their DNA.
And then they undergo mitosis, which is the actual division of chromosomes.
And then cytokinesis, which is when the cell divides into two separate cells.
And along the way, there's a lot of different checkpoints.
usually during that interface, that ensure that cells grow at an appropriate rate, so not too
quickly, we have to make sure there's enough nutrients to sustain growth in division, and to make
sure that the cells aren't replicating any mistakes or problems in the DNA. So the proteins that
we talked about in the HPV episode affect these parts of the cell cycle primarily. They encourage
excessive growth and division that allows for division of cells, even if there are problems
or mistakes in the DNA, or even if there's maybe not enough nutrients, they'll just keep growing
and growing.
So that's part of the equation.
But that isn't quite enough to cause cells to grow indefinitely.
Yeah.
That's part of what accounts for cells that can grow more rapidly and persist longer.
But there's another piece that we have to understand, and that is telomeres.
Oh, I love them.
I know, right?
So a telomere is the end part of our chromosomes.
It's like a cap on the end of our chromosomes.
The very, very tips.
In general, during normal DNA replication,
it can be very difficult for our cells
to fully replicate the entirety of the chromosome.
So often the very, very ends of the chromosomes,
where the telomeres are,
actually become shorter with each cell division.
This is normal. This happens as a normal part of cell division.
So the telomeres are there as like an insurance policy.
Like, okay, well, we miss the very end, but we didn't really need it.
No big deal.
But as cells divide and divide, those ends get shorter and shorter with each division.
And eventually, once the telomeres are sufficiently shortened, it actually triggers an arrest of growth, an arrest of the cell cycle.
no more cell division.
So you can kind of think of it like every cell having a limited number of times,
it can divide before those telomeres get too short.
Like you've heard, like, your heart only has a certain number of beats or whatever.
Yeah.
I don't think that's really true, but it's kind of like that idea.
But in some cells, like cancer cells, they've lost the ability to sense when telomeres get too short.
and they keep on dividing and dividing and dividing.
So they get shorter and shorter with each division.
Now, eventually, those cells too will die,
or at least stop replicating because of damage.
Once you get too damaged in your DNA,
then you just have damaged DNA and that cell can't continue to divide.
So there has to be something else going on here.
Yeah.
How can this cell line keep dividing indefinitely,
truly indefinitely.
Does it add on length?
Erin, it sure does.
Interesting.
Turns out there's an entire enzyme, group of enzymes, called telomerase.
I don't know if that's the proper way to pronounce it, but I think it's close.
Tilomerase is an enzyme that specifically replicates just those telomere sequences
to make sure that they are not lost or shortened during replication,
which allows cells to escape this normal, what is a normal mechanism
that says cells should only divide a certain number of times and then stop dividing.
If you turn telomerase on and you have that enzyme present,
then these cells will be able to divide forever.
And as it turns out, over 90% of cancer cells,
most cancer cells have additional mutations beyond just in those tumor suppressor genes that we
talked about that turn on the expression of telomerase.
Hmm.
Mm-hmm.
And so telomerase and telomeres also have something to do with aging, like the process of aging.
Because I know that that's what a lot of like anti-aging studies or whatever focus on.
It's thought that they have a large amount to do with aging, that like cellular senescence is governed by telomeres and like the length of telomeres.
Right.
And so it would make sense that like more quote unquote insults to your body through stress or inflammation or whatever would lead to more like cells turning over more quickly, which leads to faster aging period.
Exactly.
Yeah.
At a cellular level.
Like aging at a cellular level.
But there's also the.
downside that it is cancer. It is cancer. Interesting. Yes. And so that's because, okay, I feel like what you're
getting at is some really interesting things. Right? Because the thing about Heela and many of our
cell lines is that they have mutations in not just telomerase, right? They have mutations in these other
properties like P53, like P retinoblastoma, these other genes that also control, like, how
rapid the cell grows. And if it can grow, but still miss other important cell cycle checkpoints,
like that DNA is intact, etc. Tillomerase is separate from all of that. So if you could induce
just telomerase, you could in theory get a cell to divide indefinitely that doesn't have the
other properties of cancers.
Right.
Like there would still be all of the checks in place, except for the fact that the telomeres
would just not shorten.
Not shorten.
Exactly.
Right.
And so that is actually a way that people have started to generate cell lines today.
Interesting.
Right?
It's, are these cell lines proprietary?
Oh, probably.
Yeah.
I thought so.
Yeah.
I mean, every cell line that's developed, it's, yeah, nowadays.
Yeah.
Yeah.
But yeah.
So today we have a lot of different cell lines.
Heela was the first, but now we have so, so many.
We have cell lines from mice, from dogs, from humans, from so many different animals.
We have them from kidney cells, from ovaries, from embryos.
We have cell lines from...
so many different things that we can use for very specific purposes.
And because we've learned so much about the cell cycle and about these specific controls on what
can make a cell immortal, we can then create new cell lines. We can use viral vectors or
engineer viruses like HPV to integrate into genomes and cause these changes that can then
turn a normal cell into an immortal cell.
Or, like I mentioned already, we can just induce the production of telomerase so that we can
then hopefully keep all of the other normal cellular architecture rather than more cancerous
architecture that HPV infection would cause.
Interesting.
I know.
Oh, this is kind of tangentially related.
Okay.
But we got a couple of emails from people reminding us that cervical cancer is not absolutely 100% associated with HPV.
Yes.
It's very, very, very, like the vast, vast majority, like 99%.
But there are some cases that are not caused by HPV.
Yeah, we should have said that in our intro as a correction.
But yes, it's like 99.7 or 99.9% of all cervical cancers are known to be associated and caused by HPV.
Yes.
Yeah.
So thank you to the people who reached out.
Yes, thank you.
Anyways, so back to cell lines.
The last thing that I want to point out that I think is important not only to kind of understand cell culture and cell lines, but also because when we kind of talk about the current status of cell culture,
I want to talk a little bit more about it, is the difference between an immortal cell line and a stem cell.
So I think a lot of times when people hear, especially if you don't have a lot of training in biology and don't work with cell cultures all the time, when you hear cell culture, a lot of times what people think of are stem cells.
And I think that's because they get a lot of headlines because they can be controversial.
So immortal cell lines like Heela and stem cells are not the same.
Both are used in scientific research and both are incredibly important.
But there's some pretty important differences.
Immortalized cell lines like Heela come from what are called primary tissues to begin with,
which means they come from differentiated, like you can think of them as grown-up cells,
like kidney cells or macrophages, which are white blood cells, or cervical epithelial cancer cells in the case of hila.
So these cells are differentiated. They have a particular function in our bodies. They have a specific
kind of architecture. And so cells from a kidney are going to be different than cells from a cervix.
And whenever these cells divide, even when they do so indefinitely, they stay roughly the same.
Stem cells, on the other hand, are undifferentiated.
So these cells have the potential to become any or many different cell types from like a neuron to a kidney, to a liver cell, to a muscle cell, to whatever.
Right.
So sometimes people describe stem cells as like a little kid that has the potential to be anything they want to be when they grow up.
and differentiated cells as a grown-up who has one job or function.
Oh, wow.
Right?
That makes me sad.
I don't like that analogy at all because you can change careers.
But anyways, I really tried to come up with a better one and I couldn't.
So that's what I got.
But anyways, so that's kind of the biggest difference between stem cells and differentiated kind of adult cells.
There are two different kinds of stem cells as well in humans.
There's embryonic stem cells, which are like where we began.
So a zygote becomes embryonic stem cells.
That's how we all formed in utero.
And these cells can become literally any cell type.
They become every single cell in our body.
But even as grown humans, we have stem cells in our bodies as well.
they're called somatic stem cells, meaning they are in our body currently rather than in an embryo.
And these are very important because they serve to regenerate cells in our body that need regeneration.
So like in our skin, for example, in the basal layer, the very bottom layer, there are stem cells that are epidermal stem cells that not only continually divide and produce more epidermal stem cells,
but they can also differentiate into grown-up skin cells.
Mm-hmm.
Right?
And then we also have, like, in our bone marrow, hematopoetic stem cells, which can become
all of our blood cells, red blood cells, white blood cells, platelets.
Right.
So the big difference between embryonic stem cells and most somatic stem cells is that these
somatic stem cells can only become like one or a few different kinds of cells.
Whereas embryonic can become like literally anything.
Literally anything. Right, right.
So that's just like to keep in mind they're different.
Most cell lines that we use don't come from embryos or embryonic stem cells.
They come from differentiated animal or human cells.
So they come from a piece of tissue and then they are made into a cell line.
That's it.
Aaron.
Do you have any other questions for me about cell culture?
Oh, I'm trying to think.
So the whole thing about there's a limited number of times that a particular cell line can, or a particular cell can replicate before the machinery just shuts down. That's the hayflick limit, right? Yeah. How much does that vary across different cell types? Oh, that's a good question. I don't fully know, but based on how different cell types function in adult humans, I would guess that there's quite a bit of very
ability. And maybe not necessarily in what that limit could theoretically be, but at least in what
that limit is in a normal, like human body, for example. Right. Like in practice. Exactly.
Okay. Yeah. Interesting. So Aaron. Yes. Let's talk about where these cells came from.
Let's do it. Let's take a quick break first.
Anyone who works long hours knows the routine. Wash, sanitize, repeat.
By the end of the day, your hands feel like they've been through something.
That's why O'Keefe's working hands hand cream is such a relief.
It's a concentrated hand cream that is specifically designed to relieve extremely dry, cracked hands
caused by constant hand washing and harsh conditions.
Working hands creates a protective layer on the skin that locks in moisture.
It's non-greasy, unscented, and absorbs quickly.
A little goes a long way.
Moisturization that lasts up to 48 hours.
It's made for people whose hands take a bead.
at work, from health care and food service to salon, lab, and caregiving environments.
It's been relied on for decades by people who wash their hands constantly or work in harsh
conditions because it actually works.
O'Keefs is my hand cream of choice in these dry Colorado winters when it feels like my skin is
always on the verge of cracking.
It keeps them soft and smooth, no matter how harsh it is outside.
We're offering our listeners 15% off their first order of O'Keefs.
Just visit O'Keefscompany.
In 2023, a story gripped the UK, evoking horror and disbelief.
The nurse who should have been in charge of caring for tiny babies is now the most prolific
child killer in modern British history.
Everyone thought they knew how it ended.
A verdict, a villain, a nurse named Lucy Leppie.
Lucy Letby has been found guilty.
But what if we didn't get the whole story?
The moment you look at the whole picture, the case collapses.
I'm Amanda Knox, and in the new podcast, Doubt the case of Lucy Letby,
we follow the evidence and hear from the people that lived it,
to ask what really happened when the world decided who Lucy Lettby was.
No voicing of any skepticism or doubt.
It'll cause so much harm at every single level of the British establishment of this is wrong.
Listen to Doubt, The Case of Lucy Letby, on the IHeart Radio app,
Apple Podcasts, or wherever you get your podcasts.
I'm Clayton Eckerd, and in 2022, I was the lead of ABC's The Bachelor.
Unfortunately, it didn't go according to plan.
He became the first Bachelor to ever have his final rows rejected.
The internet turned on him.
If I could press a button and rewind it all I would.
But what happened to Clayton after the show made even bigger headlines.
It began as a one-night stand and ended in a,
courtroom, with Clayton at the center of a very strange paternity scandal.
The media is here.
This case has gone viral.
The dating contract.
Agree to date me, but I'm also suing you.
Please search warrant.
This is unlike anything I've ever seen before.
I'm Stephanie Young.
This is Love Trapped.
This season, an epic battle of He Said She Said, and the search for accountability in a sea of lies.
Listen to Love Trapped on the IHeart Radio app, Apple Podcast.
podcasts or wherever you get your podcasts.
So, Erin, you have taken us through Gila cells, what they are, some of what they can
be used to do, and lots of other aspects of tissue culture.
But as we know, that's just one part of the story of Gila.
Right.
And I feel super lucky that I get to tell the rest of that story, or at least like a good
chunk of it, which is the story of the woman behind those cells.
Henrietta Lax, and the legacy she has left behind, both in terms of scientific achievements,
but also in raising these important questions of ownership, informed consent, what it means to be immortal.
Right off the bat, I want to say that this is such a big story that I can't focus on all of it.
But fortunately, there are other great resources out there, including the book where I got most of this information,
The Immortal Life of Henrietta Lax by Rebecca Sclute.
And there's also a movie based on the book on HBO.
And we'll, of course, post these resources on our website so you can read more.
Okay.
So who was Henrietta Lax?
Right.
The answer you would probably come across in most biology textbooks,
especially ones that were published, like, let's say, 15 years ago or so,
is that, in short, Henrietta was a black woman who died of cervical cancer,
in 1951 at the age of 31, and from whom cells were taken, a lot of books might actually say
donated, that gave rise to the most ubiquitous immortal cell culture line that has been
used in every type of scientific research you could think of.
Literally.
Literally.
And that alone is an incredibly impressive one sentence, maybe like a run-on sentence,
biography. But what it doesn't tell you is that she was also a mother, she was a daughter,
a wife, a friend, a sister, someone who was more than just those cells and the legacy that they
have left and continue to leave behind. One of the themes that has come up more than once on this
podcast, many times on this podcast, is the problem with the lack of humanity in medicine or science.
It's often more straightforward or efficient to look for what we can measure or observe directly
to make a diagnosis or to detect patterns within a population.
And of course, the application of the statistical analysis and data collection and the development
of diagnostic criteria, it's all been hugely beneficial.
But you know how people say you can't see the forest for the trees?
Yeah.
This is kind of like the opposite, losing sight of the tree.
trees for the forest.
It's so important to remember, but way too easy to forget, that behind each of those
data points, behind each person diagnosed with a disease, behind each person who makes a
discovery or a diagnosis, is a human being with an entire history and life of their own.
And I think keeping that humanity in science and seeing both the forest and the trees
probably makes you a better scientist and a better physician and probably just a better human overall.
Yeah.
And that's a big reason kind of why we include these first-hand accounts in our episodes,
to ground these topics in real life, to remind ourselves and hopefully listeners that, like,
these diseases don't happen just like in a textbook.
Like they happen to real people, people experience them.
And that's also why for this episode, rather than it,
including a firsthand account, we wanted to focus just this almost this whole history section
on this person, on the firsthand account, on the person behind these Heala cells.
Yeah, we weren't lying when we said this is a very different episode.
Yeah.
So who was Heela?
We keep saying Heela Hella.
Hella, He, He, H, lowercase E, capital H, lowercase A.
Heila stands for Henrietta Lax.
the first two letters of her first and last name.
Henrietta Lax was born Loretta Pleasant in Roanoke, Virginia on August 1, 1920.
Henrietta was only four when her mother Eliza died, and to help take care of Henrietta and her nine siblings,
her father, Johnny, brought the family to Clover, Virginia, where Henrietta lived with her grandfather, Tommy Lacks.
Johnny's family had lived in Clover for decades. His ancestors had fathered.
the land while enslaved, and they continued to farm tobacco after slavery ended.
Henrietta spent her childhood working on the farm,
milking cows, feeding chickens, taking care of the pigs and horses,
planting and collecting tobacco leaves.
Getting to school wasn't as simple as hopping on a bus.
It was a long two-mile walk each way,
and Henrietta made that walk every day through sixth grade.
In her free time, she and her cousins would swim,
in the swimming hole, or play tag or hopscotch, or they would take their earnings and go to the
movie theater where they would watch black and white movies, sitting the only place they were allowed,
which was in the colored section. Henrietta's friends described her as lively and tough,
someone who always stood her ground, but also someone who was warm and sweet and generous,
the person who made you see life in technicolor when you were around her. When she was 20,
Henrietta married David, or Day, Lacks.
Over the course of their relationship, they would have five children, Lawrence, Elsie, David, or Sunny, Deborah, and Zakaria, born Joseph.
Not long after getting married, Henrietta and Day moved up to Baltimore, where there was a huge boom in industrial jobs now that the U.S. had entered into World War II.
Henrietta didn't love living in Baltimore in the city, so she would take the kids back to Clover,
as often as she could, which was most every weekend.
And among her friends and family, Henrietta was known for being an amazing cook,
spending hours every day putting together rice pudding or slow-cooked greens or spaghetti
and meatballs, cooking tons and tons of food so she could feed her kids and her husband
as well as whatever cousins happened to stop by.
In the evenings, she and day would play cards and listen to music if he was off work,
and if he wasn't, she would often go out dancing with her friends.
friend Sadie. But life for Henrietta wasn't always this house full of delicious food or nights
out dancing. There were also some incredibly tough times, like when she took her daughter Elsie
to Crownsville State Hospital, which used to be known as the Hospital for the Negro insane.
Elsie, who was deaf and seemed to suffer from epilepsy, would die in that hospital when she was
15, which was after Henrietta died. But Henrietta's family talked about how dropping Elsie off there was
one of the most difficult times for Henrietta, something that she never quite recovered from.
And so for 10 years, Henrietta and her family lived in Baltimore through these ups and downs.
And then one cold and rainy January day in 1951, Day drove Henrietta to Johns Hopkins Hospital,
where she had an appointment to check out what she called a knot on her womb.
Just a few months before this appointment,
she had been at the same hospital where she had given birth to Zakaria,
but there was no note left behind about this knot or lump
or any sort of cervical lesion or irregularity.
But she knew that there was something there,
something that was causing her a lot of pain and irregular bleeding.
She saw a local doctor first, who said it was a syphilis sore,
but the test came back negative.
And so he recommended that she had all the way to Johns Hopkins,
which is a 20-mile drive.
And there wasn't anything particularly special about Johns Hopkins itself.
It was just that the other major hospitals that were closer
wouldn't treat black people.
Even Johns Hopkins was segregated.
At Hopkins, she was seen by gynecologist Howard Jones,
who took note of the pain that she described,
the bleeding in between periods, and the fact that she felt a lump on the neck of her womb.
And when he examined her, he found the lump that she mentioned, which he described as a cervical
tumor, one unlike any he had ever seen before, and he would never see the likes of again.
It was a hard mass about the size of a nickel, but unlike other cervical lesions, this was
shiny and purple. He compared it to grape jello. And it was,
bled so easily, like just with the smallest sort of like poking.
Yeah.
He cut off a little bit for a biopsy and told Henrietta to go home and wait for an answer.
And she didn't have to wait long.
A few days later on February 5th, the 1951,
Henrietta received the news that the tumor on her cervix was malignant
and that she would have to return to the hospital for treatment,
which at the time consisted of radium tubes being stitched into the tumor and
nearby tissue.
Which sounds incredibly painful.
So the next day, she was back in the hospital undergoing this painful procedure,
fortunately while unconscious under anesthesia.
And during this procedure, the surgeon, Lawrence Wharton Jr., sliced two dime-sized pieces
of tissue from Henrietta's cervix, one from the region where there was a tumor and the other
from the unaffected region.
Dime size seems big, but yeah.
And it does seem big.
Yeah. He then packaged these up to be sent to a tissue culture lab run by a guy named George Guy,
where they were then processed by a lab employee named Mary Kubichek. Mary cut up the tissue into tiny,
tiny bits and placed them into culture tubes with nutritional broth, making sure to keep the tumor tissue
separate from the normal tissue. She labeled the tubes Heela, the first two letters, like I said,
of Henrietta Lacks's first and last name, and that was the standard naming,
procedure in the lab. Mary didn't expect much to happen, honestly, because the lab had worked on
cell culture for years, and the highly sought-after immortal human cell line was beginning to
feel like a pipe dream. It's, so I can I ask a question? Yeah. So was this a lab that, like,
they, they were just taking samples from everyone just trying to grow cells unsuccessfully? Yeah.
Okay, okay. Yeah.
I mean, and tissue culture had kind of like fallen out of fashion for a while. And so this, like, this lab was kind of one of the main ones still working on it.
Still trying. Yeah, because it seemed hopeless to find, you know, this like immortal cell line where you could actually do sustained research on a particular cell. Yeah. And was it kind of standard practice that surgeons would take samples of everyone that they were operating on? Yes, absolutely. So that's.
That's what's sort of the interesting thing. And it's also what surprised me. And I, to be honest,
in the Immortal Life book, which was published in 2010, I believe, I'm not sure whether anything
has changed, but at least according to that book, like a lot of the ownership of tissue ends in the
operating room. Like once that tissue is removed from your body, whether it's your appendix,
whether it's whatever, that no longer belongs to you. And you, as an individual,
can't, like, there's been a lot of legal battles over the ownership of cell lines.
And what seems to be the case is that an individual cannot own their own cell lines,
which I think is very interesting, unless you were like, were scientists and you developed
it yourself or whatever.
You develop your own cell line, then you can.
But if someone takes it from you.
Right.
Anyway, yeah.
Sorry.
So, yeah.
And so, yeah, George and his wife,
Margaret had worked for years and years for an immortal cell line.
Wait, they were married?
Yes.
Oh, so Margaret different than Mary.
Oh.
Yeah.
But Margaret also worked in the lab, yeah.
Okay, okay.
And apparently an immortal cell line had been found before using my cells, but the guys
didn't want my cells.
They wanted to achieve this with human cells.
And so they tried and failed, and they tried and failed for 30 years.
Wow. So you asked, where did they get all of this tissue to try on? Yeah. Yeah. I mean, quote unquote, donation. Right. Like, so they would partner with different physicians or surgeons who would take it from a patient. And way more often than not, I mean, it was like the standard rule was to do this without the patient's knowledge, without their consent. And that was the common practice at the time. I think that there are some different consent rules today.
in terms of like, but I don't think it's, I don't think you are legally required, you got it?
I'll talk a little bit more about it.
Okay, good.
Okay.
It's surprisingly, correct me if I'm wrong, not that different today.
It's not, Erin.
Yeah.
Yeah.
So anyway.
One of the doctors that George Guy had partnered with was this guy named Richard Tilland,
who was a gynecologist trying to get to the bottom.
of whether or not in situ cervical cancer posed a threat and could become invasive or whether
it would just remain in place. So we talked a little bit about this discussion in our HPV episode.
Right. Yeah. And Taylind was firmly in the in situ cancers are pre-cancers and super dangerous
camp. And so he was like, okay, if only I can compare the cell types of these two cancers
alongside normal cervical cells, I can show that I've been right all along and that all
of these hysterectomies I've performed were not unwarranted. So he was like a big, you know,
oh, there's cancer, we're going to do a hysterectomy. We're going to cut the whole thing out. Yeah.
Yeah, exactly. And so he formed a deal with George Guy where he would provide Guy with cervical
cancer tissue from his patients and Guy would try to culture the cells. Okay. It's all coming together.
There we go. Any person who walked into Johns Hopkins and was diagnosed with cervical cancer
would have a tiny bit of their tissue sent off to George Guy's lab without their knowledge.
Needless to say, ignore their consent.
Okay.
One of these people was Henrietta lax.
So, back to Henrietta's cells in a lab.
Usually what happened next, and what Mary certainly expected to happen, was that the cells in these tubes would maybe hang on for a few days at most, but would eventually die.
Yeah.
And this is exactly what did happen, to the bits of tissue taken from the unaffected region of
Henrietta's cervix.
Oh.
But it didn't happen, not even close, to the bits of cancerous tissue.
The cells in those tubes didn't just hang in there.
They grew and they grew and they grew.
Mary had never seen anything like it before, and she hurried off to tell George.
After hearing the news from Mary, it occurred to him that,
This could be what they've been looking for all of those decades.
Finally, an immortal cell line.
And he wasn't shy about his discovery.
He made an announcement on television holding up a tube of cells that he promised would help conquer cancer.
He told his colleagues who asked him to send them some of the cells so that they could play around with them.
And then when they receive the cells, they in turn grew more and sent those around the world.
But as the news of this immortal human cell line called Hila was spreading among the medical community, not just at Johns Hopkins, but seriously around the world, there was one person who knew nothing about it, the person whose name was on those cells, the person from whom they had been taken, Henrietta Lacks.
By the time Guy had made his television appearance, Henrietta had returned home from the hospital.
And although initially she seemed to be getting better from the radium treatments, the improvements didn't last.
Over the next several months, Henrietta grew weaker and felt aches and pains in her abdomen.
She hid it well, though, with just her husband and a few of her friends and cousins in the know.
But then she took a turn for the worse.
Follow-up doctor's visits had found a mass attached to her pelvic wall and tumors on her uterus, kidneys, and urethra.
Her pain was unbearable to the point where she just couldn't hide it anymore.
And her doctors wrote that treatment was not really possible.
The tumors were inoperable and pain relief was the only option, which was for the most part
seemed to be ineffective.
During one of these doctor's visits, actually, Tillinge tried to take more of the tissue
from Henrietta's cervix, again without her consent or not.
knowledge, but it was too full of toxins due to her advanced disease and the cells died in culture.
Henrietta spent the last month of her life in the hospital at Johns Hopkins,
dealing with unbearable pain, high fevers, nausea, and new tumors that seem to appear daily.
When Day brought the children to visit, she watched them through the window until she was unable to get out of bed anymore.
and on October 4th, 1951, Henrietta Lax died.
And while her family and friends saw it as an occasion for mourning,
George Guy saw it as an opportunity to collect more samples
from this woman who produced the first immortal cell culture line.
What?
It was, yeah.
So he asked Day for permission for an autopsy
without making it explicit that they wanted more samples from her
or that they got samples from her in the first place.
In the first place.
Yeah.
And I think what's interesting about this is that while it was legal at this time
to take tissue from a living person without their consent,
it was not legal to perform an autopsy or take tissue from the deceased without consent.
Right.
And that's still true.
Like the rules that govern what you can do with tissues from a dead body are very strict.
Right, they are. But they're not as strict for those that are living, which is just fascinating.
It's so bizarre. Yeah. And at first, Day said no way, but they asked again when he came to the hospital and he finally agreed to a partial autopsy.
Mary Kubichick, who first cultured Henrietta cells, stood next to the pathologist as he cut samples from Henrietta's bladder, bowel, uterus, kidney, vagina, ovary, appendix.
liver, heart, lungs, and of course, cervix, placing them into petri dishes for later research.
Finally, the autopsy was complete and Henrietta was allowed to rest.
She was buried in the cemetery behind the house where she grew up in Clover.
But as we know, just because Henrietta stopped living doesn't mean she stopped impacting people's
lives.
There's this quote by someone named Irvin Yalom,
where the basic gist of it is that everybody dies twice.
The first being like your actual death and the second when the last person who knows you
dies.
Yeah.
And if that's the case, Henrietta's memory will be carried on for a very long time.
In part due to the important conversations that have taken place because of her quote
unquote donation and this question of consent and in part because of the many people who
have done so much to bring awareness to her life and experiences. And another part, again,
due to the incredible achievements made possible by Gila cells. So let's talk a little bit about those.
Yes, let's. So as I mentioned, even before Henrietta died, her cells were being sent all over
the world to laboratories not just in biomedical science, but chemistry, physics, engineering.
I mean, you name it. Like you said, any kind of research you could imagine.
imagine, for sure, heila cells have been involved. Yeah, definitely. And even though the cells were
pretty easy to maintain in the lab, demand still outpaced supply, like by a lot. In 1952, the United
States experienced the worst polio outbreak in the nation's history, with thousands killed and tens of
thousands left paralyzed, and everyone demanding a vaccine for the disease. And even though there were
many people researching a polio vaccine, as we know from our polio episode back all the way in season
one.
A long time ago.
Long time ago.
Progress was slow because the virus was difficult to grow in cell culture and often had to
be grown in live monkeys.
That is until helo cells came along.
Wow.
Which were found to be able to be infected with polio virus.
A massive cell production laboratory was set up at Tuskegee.
University, the first of its kind. At first, the cells that were produced here were pretty much
only for polio research, but eventually when it became apparent that there was not going to be
a shortage of heli cells, the Tuskegee Center began sending the cells not just to polio labs,
but to anyone who wanted to use the cells to study basically anything. Ten dollars a sample
plus air express fees. These cells were soon used to study all kinds of viruses to
develop in standardized tissue culture techniques to work on best practices for freezing and storing
cells and so much more.
Erin, you went into like a bunch of the things.
And it's funny when I was planning on this episode, I was like, oh, I'm going to go through
all the things that they accomplish.
Like there's no way to even begin to list them.
Right.
Like it's, yeah.
And this early work, though, using hila cells helped to build the foundation of a field
that would later go on to allow for stem cell isolation, cloning of.
whole animals in vitro fertilization. The study of helic cells also led to the discovery that there
weren't 48, but rather 46 human chromosomes. And then this then led to the growth of the field of
diagnosis of genetic diseases involving chromosome abnormalities, such as Down syndrome or
Kleinfelter syndrome or Turner syndrome. Wow. Yeah. Heela cells were blasted with radiation
during the Cold War to look at the effects of radiation on a cellular level, or they were used
to observe the effects of steroids, hormones, vitamins, cancers, stressors, bacteria. Basically,
if you can think of a biomedical or really any kind of research topic, Heela cells were there
as part of it. It was clear that the application of Heela cells in biomedical research
was basically endless. And soon the demand for the cells once again outpace the
production capacity of Tuskegee. So a new company was started, microbiological associates,
which shipped out Henrietta's cells to whoever could pay. And even though you probably would have
guessed this already, I'll note that no one in the Lax family had been told about this endeavor,
much less given any compensation for the industry that had grown out of the cells taken from
Henrietta without her consent.
At this point, the excitement around Henrietta's cells had grown beyond just what people
were using them to do research on.
The public had started to learn about them as well.
News articles began appearing about the cells, but these articles didn't focus just on the
scientific achievements made possible by Gila cells.
They also wanted to talk about the woman herself.
But this presented an issue for the doctors who took and used her cells.
without her permission.
Using her real name in the article would not only link the lax family to those cells,
meaning whatever genetic or cellular information that arose from this research could be
tied to them.
But another reason and maybe the real reason that Tillind and Guy cared was because it
meant that the lax family would also then learn that Henrietta's cells were taken without
her permission to create a profitable industry.
The laws at the time weren't as protective of a patient's rights as they were today,
even though it's only marginally more, in terms of informed consent and patient confidentiality.
But it was still clear at that point that that's where the laws were headed.
And as a compromise, the editors of some of these articles agreed to change her name,
Henrietta's name, to Helen L.
And it was also said in this article that the tissue was taken from her after her death.
And so from this article on, this was like one of the first articles about Henrietta and the fact that they were her cells,
Henrietta Lax would be changed to Helen Lane or Helen Larson, leaving her family in the dark about the existence of her cells.
But even if the Lax family didn't know about the cells and their connection to them, many researchers did.
and they would soon be knocking at the door.
By 1966, Heela cells had been in use in all kinds of research for 15 years,
and cell culture technology had also greatly advanced
with the isolation of many other different cell lines.
But then came what I think in the book was referred to as the Heela bomb.
In 1966, it was suggested that many of the different human cell lines
that scientists believe they had isolated and conducted research on were actually Heela contaminated,
meaning that Heela had taken over them, meaning that they weren't what they thought they were.
Yeah.
And so this, like, I guess, vigorous quality of Heela cells had long been known,
but this massive takeover was on a whole other level.
Because if this were true, that meant millions of dollars of research money and years of research were essentially wasted.
Because they were done on cells with properties that may not have been there.
Right.
Yeah.
Like you thought that you were working with a kidney and you were working with Heela.
Exactly.
Yeah.
But, okay, first things first, researchers were like, well, we need to get like a handle on the extent of the contamination.
that exists.
And also we, you know, and once we get that done, we want to find a way to better control
contamination in the future.
And so that, you know, both of those things could be achieved by developing a test specifically
for the presence of helic cells.
So keep that in mind.
Okay.
We need a test specifically for helic cells.
Okay.
Yeah.
It's not going to be good.
No.
By the 1970s, the misleading names of Helen Lollinger,
Lane or Helen Larson began to fall out of use as journalists and scientists began to set the record
straight, with one person in a letter to nature suggesting that it might be time to authenticate
her name, quote, and let he, La, enjoy the fame she so richly deserves. So even though Henrietta's
real name and connection to the cells began to be widely known among the researchers who cultured
herself, the family still had no idea of their existence. Until 1973, when Bobette, Lawrence's
wife, met the brother-in-law of a friend of hers. And this brother-in-law of her friend worked at the
NIH. And when Bobette mentioned that her last name was Lax, he was like, oh, that's strange.
I work with cells from someone named Henrietta Lax. And Babette was like, well, that was my mother-in-law's
name, but she died 25 years ago.
And he was like, oh my gosh, that's whose cells I work with.
What?
And obviously this led to a lot of confusion for Bobbett, the news that this guy worked
with her deceased mother-in-law's cells, and the fact that he ordered them, quote,
just like everyone else.
Right.
Which implied that there were people all over the country and even all over the world
who had access to her deceased mother-in-law's cell.
That's, I can't even imagine how bizarre.
Right.
Would it felt like a violation or an invasion maybe, like just, I mean, this was, yeah, like in many ways this seemed like some sort of a nightmare.
Like first they took Henrietta's cells without asking, and it seemed likely or at least possible that next they would try to conduct non-consensual research on her relatives, which was not an unfounded fear.
Because while discussing this problem of Gila contamination, one of the scientists suggested that a lot of the headache could be resolved if they had genetic markers to test for the presence of Gila cells.
And one way to do that would be to test Henrietta's children as well as day lax.
No problem, one of the doctors said.
They're still patients at Johns Hopkins so we can call them right up.
And that's what they did.
Yeah. According to the postdoc put in charge of collecting the blood from the Lax family, she called up the family and explained that they wanted to draw some blood from the family members so that they can develop these genetic markers.
But according today, what they said was that they wanted to test for the same cancer that Henrietta had and her children.
Oh dear. And so they agreed and blood was drawn. Did anyone attempt to?
to obtain informed consent?
No.
Did anyone fill out an IRB?
No.
No.
And while those requirements were not yet finalized in the law,
they were only months or days away from being finalized.
Oh, my God.
And when Deborah asked Victor McCusick, who spearheaded this effort,
about her mother and about herself,
he ticked off some things that they had helped to accomplish.
like the polio vaccine, this genetic research, atomic bomb testing, et cetera, and then he handed
her a book that he had edited called Medical Genetics. In that book, she found jargon-filled
sentences and a photo of her mother that no one had ever remembered providing and certainly
had not given permission to print. What? Yeah. And this was as far as he went to explain
how her cells were still alive, even though Henrietta had died.
and why they had taken ourselves and how they had accomplished those things.
And they certainly didn't tell Deborah any cancer results,
because they weren't testing for cancer, of course.
Of course not.
They left the Lax family with way more questions than they attempted to answer.
And over the next few decades, the answers would be slow to come.
A reporter for Rolling Stone named Michael Rogers,
who is one of the first, if not the first, reporters to contact the Lax family
about Henrietta, published an article that led to many other reporters and people knocking on
their door, some well-intentioned, others very much not. But overall, over time, this narrative
was shifting from what have these cells been used to accomplish to what does informed consent mean?
What rights does a person have over their body? How can patient privacy be ensured,
especially in this age of genetic research.
Can genes be patented?
And finally, after all this time, who was the person from whom these cells were taken?
Yeah.
And many people have worked to raise awareness about Henrietta Lax and her story,
especially her family and also Rebecca Sclute, who wrote the book,
The Immortal Life of Henrietta Lacks.
And Henrietta's story is still invoked in discussions of how race intersects
with informed consent and tissue research and patient privacy.
Some institutions and companies that have profited off Henrietta's cells are finally donating
money as a small step towards acknowledging her contribution.
And Henrietta's legacy extends far beyond the scientific and medical advancements that her cells
help to achieve.
There is now the Henrietta Lax Foundation, which provides, quote, financial assistance to
individuals and families, particularly within minority communities, who were involved in historic
research cases without their knowledge, consent, or benefit. This includes the cases of Henrietta Lacks
and Gila cells, the Tuskegee syphilis studies, and the human radiation experiments, among others.
In addition, several institutions have awarded Henrietta honorary doctorates. There are plans for a Johns
Hopkins Research Building to be named after her. She's now in the National Women's Hall of Fame. Her
has been tied to laws protecting participants in clinical research trials. There are plays and songs
about her. I mean, the list could go on forever, just like her cells. So, Erin, even though I feel like
I went on forever, there's so much I didn't cover, and I'm very excited to hear what you're going
to tell me about what Heela cells and what informed consent and tissue culture research is up to
today. Oh, I can't wait to tell you. We'll take a quick break first. There have been over 110,000
research articles published using helicels. That's estimated. Incredible. Three Nobel Prizes
have been awarded for work with helic cells, most recently in 2014, for the development of advanced
microscopy techniques that allow you to view cellular growth, like live while it's happening.
And like we kind of mentioned many times already, helo cells have been used for literally everything
that you can imagine, from the study of virology to cancer therapeutics, drug delivery systems,
basic cellular functions, cell signaling, everything, everything.
There's a visual that I'll link to that I think kind of gives you a little bit of a clue of just like the array of topics and just how many there are.
But literally everything that we do in biology has been done on helic cells.
It's incredible.
It's incredible.
We have come amazingly far in the last 70 years in terms of our understanding, not only of cellular developmental and molecular biology,
but also in our ability to use this knowledge for therapeutics, for vaccines.
Things that we talked about in so many previous episodes this season and in previous seasons,
like in our Huntington's disease episode, when we talked about developments in gene therapy
and the potential for something like CRISPR to change the game when it comes to genetic diseases,
this is only possible because of in vitro cell lines.
We have made immense strides in.
in developing specific targeted cancer treatments like monoclonal antibodies.
We've also developed treatments for things like even COVID and other infectious diseases.
That's amazing.
We are getting better and better at developing cell lines, both from human cells, but also
animal cell lines, to produce very specific proteins and antibodies that are closer and closer to
exactly like a very targeted type of structure that we want to produce.
It's really difficult to over, I don't think it's possible to overstate the impact that
these cells have had.
No, I think it's, it's probably like one of the biggest things in biomedical research history.
Right, right.
So many things.
So another future for Ray that we've touched on in the past, in our organ training,
transplantation episode is the development of induced pluripotent stem cells. Okay. So let's talk about this a little bit.
Pluripotent stem cells are like embryonic stem cells. They can become any type of cell. But induced
pluripotent stem cells means that you take cells from like a grown human, like a full adult human or a kid,
but a fully differentiated cell.
And using things that are too complicated for me to fully understand and talk about,
but including telomerase, you can cause these cells to revert back to being stem cells.
We have the technology to do this today.
And this means that not only can you develop an immortal cell line from any person's cells,
but you can develop stem cells from any individual cells,
which means that those cells could then be induced to differentiate into any other cell type.
That type of technology combined with technology to grow cells in three-dimensional structures.
It's the exact type of technology that makes it even imaginable to someday be able to grow entire human organs,
which could change the game when it comes to treatment of chronic and currently uncurable.
diseases. And even though we don't have that technology right now, the fact that it's even something
that we can dream about is only possible because of Healus cells, because of Henrietta Lax.
Yeah. Yeah. It's hard to even like put into words how influential this has been. Like it's,
yeah. Yeah. But even though that's hard to put into words, just how influential in terms of scientific
achievements, Heela cells have been. Like you mentioned a lot, Aaron, we have to recognize what a massive
kind of ethical issue has arisen because of this. Not only was it using cells without her
permission, it was also identifying these cells as belonging to her, thereby releasing information
about her and her family members without their knowledge or permission. Right. And the thing is,
like you kind of alluded to, Erin, we really haven't completely fixed the system to ensure that this could never happen again.
Not at all. It's very, like, alarming.
Yes. So currently, the common rule, that's what it's called, it's the code from the Department of Health and Human Services that details the protection of human subjects,
basically laying out the requirements for IRB, Institutional Review Board Review, and everything that pertain.
to the ethics of human subjects research in the United States.
At this point in time, still allows for the use of biospecimens without informed consent
so long as they are de-identified.
So no longer can you take a cell and call it Heela, thereby knowing that it came from
Henrietta Lacks.
But you could take a tissue sample from someone, slap on a number,
that isn't like their medical record number,
but it's just some other number,
and thereby make it de-identified.
So it has no association with them without ever telling them.
The problem is that that is not keeping up with the times.
Today, you could sequence a genome from that cell
and have all of that genetic information.
And especially when you think of how many people swab their cheeks and then send in their DNA to be sequenced to all of these different companies, then you have that information and can compare it across these databases.
In light of how much technology has progressed, that type of allowance for allowing the use of biospecimens without informed consent, it's problematic.
there are some new regulations that have come into play that say that if there is going to be any
genomic analysis of human data, then you do have to obtain informed consent. But that's still
just one piece of it. So really this is, even though this was last reviewed in 2017, which wasn't
that long ago, it's still out of date at this point. I mean, like we know that technically.
technology moves faster than ethics.
Ethics and laws.
Always.
Like, this isn't, the writing has been on the wall.
Right.
For a very long time.
It was more than on the wall in 2017 as well.
Exactly.
Exactly.
Yeah.
I think, you know, the good thing is, so 2020 was Henry Adelax's 100th.
100th anniversary of the day she was born.
Right.
And so I think that, you know, because of that, there was like a large amount of celebration because of that.
And I think that more and more we are having these conversations.
Right.
But like you said, Erin, people are only just now barely beginning to actually put their money where their mouth is, both literally and figuratively, to make substantial change in the way that we deal with ethics in human research studies.
There have been two or three institutes in the U.S. and the U.K.
that have made either a single large donation or have committed to make donations to the
Henry Adelax Foundation every time that they develop new cell lines from Gila cells.
The head of NIH also got a large grant and is donating a portion of it to the foundation.
So people are kind of just finally starting to recognize that
because of the impact that these sales have had, like there needs to be reparations back,
essentially?
For sure, yeah.
But it's still not nearly at the point yet that it needs to be.
No, right.
But it's at least a start.
It's a start.
It's a start.
Just a delayed start.
Yeah.
So we wanted to make this episode in large part just to kind of get.
this story more press so that people can really hear about it and a lot of people have asked for us
to cover it but we also wanted to put our money where our mouth is so we also made a donation
to the henry elax foundation yeah so small step but a step nonetheless a step yeah so with that
sources sources my source list was very short for this episode primarily i used the immortal life
of Henrietta Lax by Rebecca Sklut and a few articles here and there that I will post on our website.
I'm jealous, Erin. I have a long list of articles because I had to learn all about, you know,
telomeres and things. But I'll post the full list of all of the sources that I used if you want to
learn more about the cell cycle and cell lines and also what we use Gila cells for today
and kind of the future of cell culture and cell lines. On our website,
podcast will kill you.com under the episodes tab. You can find the fullest of our sources for this
episode and every single one of our episodes. Yes. Thank you to Bloodmobile for providing the music
for this episode and all of our episodes. Thank you to the exactly right network of whom we're
extremely proud to be a part. And thank you to you listeners for listening and for recommending
this episode. Yeah. We hope that it lived up to your hopes and dreams and expectations.
Yeah. Well, until next time, wash your hands.
You filthy animals.
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