November 12, 2018 • 26 mins
If you had told people from the 1970s that few decades later the globe would be connected with powerful computers held in the palm of your hand, they could be forgiven for thinking you were seriously deluded. Now, a growing number of scientists are convinced we're on a similar threshold with genetic engineering. Today we'll take you on a tour of a biohacker's DNA experiment to change how frogs—and possibly people—grow muscles. It's an experiment which he insists anyone can try at home. He'll even sell you a kit—frogs included—to do it.
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Episode Transcript
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Speaker 1 (00:01):
Listeners, beware, Later in this podcast we'll be sticking a
needle in a little green frog. We'll also report on
people conducting experiments on themselves. We are not advocating you
try any of this at home. Right right, right right.
(00:25):
What if the tools of modern science were so accessible
that you could cure yourself of your own disease? Welcome
to Prognosis, a podcast about health, medical technology, and the
mind blowing innovation now underway in some of the least
expected places. I'm your host, Michelle fay Cortes. Today we're
(00:48):
taking a peek into the world of bio hacking, where
self taught scientists are experimenting with glow in the dark, beer,
insulin producing yeast, and even do it yourself cures for cancer.
There's a history of scientific innovations shrinking from big, expensive
and inaccessible to personalized and widely used. Just look at
(01:12):
computers in the nineteen seventies. They took up entire rooms
and pretty much only professionals had access to them. Now
millions of people carry pocket sized computers also known as smartphones, everywhere.
A growing contingent of self taught scientists, called biohackers, believe
that healthcare may be following a very similar path. Things
(01:33):
like say, genetic engineering are still the territory of experts,
scientists and universities, pharmaceutical companies, and the government, but so
called biohackers are beginning to experiment a home. So far,
all this community of d I wires has accomplished is
a whole bunch of veiled experiments. There's a guy in
Mississippi that's been trying to make bioluminescent puppies for years.
(01:56):
No glowing dogs yet, and others trying to engineer him
help to grow bigger muscles without having to spend hours
at the gym. He's no more buff than he was
when he started. Probably the most spectacular failure yet was
last February at a conference, the CEO of a bootstrapped
bio hacker startup got up on stage and announced that
(02:17):
he had herpes. Then he stripped down to his boxers
and injected himself with the gene therapy cure that was
almost certain to not work. But these determined bio hackers
are growing in number and in experience. They're sharing ideas
online and off about ways to make science and medicine
more accessible to regular folks. They prophesies one day, Just
(02:39):
like I carry around a computer in my pocket, I
might have the tools in my kitchen to concoct to
cure tailored to my own genetics. Here's Bloomberg's health reporter
Kristin Brown with the story. Recently, I found myself in
(03:02):
a West Oakland duplex watching as a sedated tree frog
got a genetic cocktail injected into its left leg. Hold
it like that, remember, and hold his leg down and
just go into the muscle like that. Inject into the
(03:23):
leg and see its swell a little bit from the fluid.
So you're just injecting one leg. The goal was to
make the frog's muscles grow bigger than usual, to make
the frog get well ripped. To do this, the frog
was getting an injection of a d N a mixture
containing a gene called full of statin, which seems to
(03:45):
play a role in muscle gross So the full of
statin is it Is it likely that it would just
change the one leg or that it would be It's
possible both right, Because they're so small, it can get
into the blood stream really easy, so it's likely that
it can change the whole body. That's our measuring weight.
But Also, when you inject into the muscle, it should
(04:07):
affect that muscle the most. So we're looking at that
muscle to see how that muscle changes, you know, getting
multiple measurements to see what he's done. This guy better.
The mad scientist behind this whole experiment is Josiah Zaner.
I first met Josiah a few years back. He had
(04:29):
just left a job at NASA to start a company
called the Odin, selling cheap science supplies over the Internet
to d I Y bio enthusiasts. Now, Josiah is sort
of a famous science stumpman. He rose to fame after
a talkie gave last year at a biotech conference provocatively
titled A step by step Guide to Genetically Modifying Yourself
(04:50):
with Crisper. Crisper is a much buzzed about gene editing
technology which allows scientists to cut and paste tiny bits
of DNA. To demonstrate how Crisper might are going to
human he injected himself with Crisper right in front of
the audience. I was actually there, and it was pretty crazy.
Crisper had never been used in humans before in the US,
(05:11):
and it certainly hadn't been directly injected into anybody's body.
The stick inspired some copycats, like that CEO Michelle mentioned
who injected himself with a harpies vaccine on stage. It
also caught the attention of the Food and Drug Administration.
The f d A didn't really like that Josiah was
selling kids to would be bio hackers online. Jose I
(05:34):
wanted to usher in a d I y science revolution
by making science seem accessible and edgy, but his tactics
had sort of backfired. You know. At first, I thought, well,
the way we could do this is let's just like
self experimentation. And I tried that and it did not
turn out like I imagined it. So then all right,
let's change, let's try something else. He didn't just want
(05:57):
to grab headlines. He wanted to help people and to
teach people how to do science so that one day
maybe they could help themselves. So last summer, Josiah sent
me a message on Facebook asking me if I had
any interest in learning how to genetically engineer frogs. Josie's mind,
teaching people to experiment on animals was one step closer
(06:17):
to teaching people how to experiment on themselves, which brings
us to August Christ Hello come on in. How's it going.
That's Esther, one of the Odin's employees. Where are the frogs?
Hey here? Oh my gosh, they're so cute. Oh my gosh,
(06:37):
take a look at these ones. These are super adorable.
God just sprouted LIGs. The Odin's headquarters looks a little
like a science e frat live stream video games playing
the background. The fridges stocked with red bull and capri son,
and right now the headquarters is filled with dozens and
(07:00):
dozens of tree frogs, all in various stages of development.
You're the ones have already been experimented on, so we
keep them over here, And these ones have yet to
be experimented or anything on, so we keep them. What
kind of frogs are they again? So they're green tree frogs.
It's high less scen area. They're just like really inexpensive
(07:21):
kind of cool. They look nice and really common, so
that's why we chose them. But Josiah's dream is a
lot bigger than buff amphibians. Within the d i Y biocommunity,
there's a lot of hope that making cutting edge science
more accessible will eventually also make medicine cheaper and more accessible.
Take insulin it's only manufactured by a few pharmaceutical companies
(07:45):
and it's really expensive, but for millions of people, it's
also a life saving medication. So one collective of bio
Hacker is based out of a community bio lab in
Oakland has been working to engineer yeast so that it
produces insulin. The idea is to have ventually develop a
safe and f d A approved method to either allow
people to make their own medicine or at least provided
(08:07):
to diabetics for very cheap. Josiah's first big d i
Y experiment was health related to Since his teen years,
he had been plagued by digestive issues. He had tried
treatment after treatment, but nothing seemed to work. So it
took matters into his own hands. He gave himself a
fecal transplant. Yes, that is exactly what it sounds like,
(08:29):
and he led a reporter write about it. After that,
email started pouring in from other people who were sick
and either frustrated with doctors or out of options. They'd
read stories about things like Crisper and the News and
all its promise of simply snipping away the disease causing
letters in a person's genetic code. They wanted to know
whether there might be a d I Y fix for
(08:50):
them too. Here's where the frogs come in. You can't
be afraid of grabbing them too type they're they're pretty robust.
You you won't. Actually, you gotta like corn them against
the wall and just grab them. I don't want to
hurt them, won't You won't. Don't worry. Oh my god,
they're really get them all right, go in. Oh my god.
(09:23):
It's like literally the hardest part of the whole joes
I experimented on himself to hopefully open people's eyes to
the promise of d I Y science. But he realized
that if you're going to teach people how to make
a geen therapy for themselves, first you have to teach
them how to test it out, in this case on frogs.
To be honest, I found the whole thing pretty creepy.
(09:45):
Before injecting the frogs with anything, Josia knocks them out.
They look limp, like they're dead. They seem like they're
slowing down. Does it work like that? Does it make
them slow down? First? Yep, it's taking in aesthetic right,
so we'll definitely Yeah, they're still going tell of them
go a different pig. Yeah, one of them looks like
(10:05):
he's down already. Over the past few years, genetic engineering
has gotten a lot easier. Josiah actually does have a PhD,
but you don't need one to get your hands on
things like DNA. Jose I ordered the fullest at in
DNA off the Internet, along with everything else for the experiment,
and had it shipped to the office. Then he just
mixes it all up in his lab. So you put
(10:27):
the DNA in these tubes. There's four of them, would
for each frog, and now you're adding the polymer that
will help get into the frog. And then what's next
next is too way and inject them way in measurement
inject There's a long history of self experimentation in science,
(10:55):
and not just in the days before being a scientist
required getting a PhD. Nobel Prize winner Barry James Marshall
ingested a type of bacteria to successfully demonstrate its role
in causing ulcers sometimes though it wasn't so successful. Way
back in the twenties, Russian physician Alexander Bogdanov performed multiple
blood transfusions on himself. He wanted to test whether the
(11:18):
procedure might bring him eternal youth. Instead, it killed him.
But Josiah doesn't just imagine a world where such self
experimentation is done by the brave and the daring. He
wants a world we're whipping up a d i Y
gene therapy no longer seems daring at all, considering where
the science is now. That is a pretty radical vision. True.
(11:42):
Modern day genetics have made curing many ones in curable
diseases seem for the first time realistic. One gene therapy Externa,
approved last year, treats the form of inherited blindness, but
most therapies are still highly experimental and the abilities of
the technology are still really limit it. I've talked with
a lot of other people on science and medicine about
(12:03):
Josiah's work, and most of them are pretty skeptical. But
if you or your loved one is sick, Josia's vision
is a pretty compelling one, no matter how dubious it sounds.
That's exactly how Lara's Saurus felt when his wife Diane
was diagnosed with stage four lung cancer, and she was
only thirty years old and had never smoked. No one
(12:25):
knows why she got the disease at such a young age,
but it seemed genetics may have played a role. The
from bolt is very very poor, and we at the
beginning we were just told there is there's not any hope.
You can perhaps delayed the inevitable a little bit, but
not much, and there's really no hope at no point
(12:45):
in trying to fight too much against its better to
just enjoy your last days together and then that's going
to be it. But Lars did not give up. Instead,
he scoured the world and the Internet for promising treatments.
He eventually stumbled upon a professor in Germany involved in
an experimental personalized PEP died vaccine project and experimental immunotherapy.
(13:07):
Laras and Diane live in Norway, so Germany isn't all
that far. Immunotherapy is hot, and for good reason. The
medical literature is filled with tales of tumors suddenly shrinking
to nothing and terminal illness is miraculously reversing course. It's
a very interesting and scientifically intriguing way of attacking cancer
(13:28):
self uh and definitely still unproven and of course even
more unproven two years uh two years ago when she
started this. But we hope and believe that it can
be helpful against her cancer, but there's certainly no proof
that it will be. Diane was traveling to Germany every
two weeks for treatment, as well as adding new things
(13:50):
for her treatment regimen when they seem promising. Somewhere along
the way, a friend Saint Law is an article about Josiah,
so Laura's reached out curious about whether a d I
crisper treatment might work for Diane. Josiah told him it
probably wouldn't, but the two out of talking it led
to a plan to make cancer metotherapy more accessible by
making a d I y. Laura's had a blog where
(14:14):
he detailed all of the different treatments that Diane was
trying out. Like Josiah, patients often reached out to Laura's
after reading it. It was impossible to tell whether any
of Diane's experimental treatments were actually working, but she was
at least still alive and doing well, and the people
are reaching out and they asked it they could perhaps
to try the same thing, But then some people didn't
(14:36):
have the necessary funding to do it, and other people
were perhaps precluded from probably every second week to Germany.
So so then the question was, you know, are the
other ways that people can get this type of treatment
without traveling every second second week to Germany, without spending
the small fortune we have done. So, Laura start a
(15:00):
Facebook group called d I Y Cancer Vaccines. On Facebook,
people with the same diagnosis as Diane could discuss their treatment,
along with the possibility of making a cancer immunotherapy themselves.
The idea of making an immunotherapy wasn't completely impossible. For
a few thousand dollars, anyone can contract a lab to
manufacture a targeted peptide like Dianes. Everything else can be
(15:23):
found at a local pharmacy or online. It's promising, but
these immunotherapies are also highly experimental. There was a chance
that they could result in devastating side effects or just
altogether not work. Not to mention, it would be extraordinarily
expensive to d I y a vaccine that targeted as
many mutations as Diannes did. That would make the chances
(15:46):
of it working even slimmer. Still, as a Facebook community grew,
a few people decided to try out making the vaccine themselves.
One fell in Norwegian tried her homebrew vaccine on her husband,
who would run out of chance after his cancer had
spread to his brain. It didn't work, but Lars was inspired.
(16:09):
Last year, with help from Josiah, he published an online
guide for how to make an immunotherapy targeting a single
mutation in a councers tumor. I think the individual steps
by themselves are not so difficult, but there is a
herd life thing, both in comprehension like do you understand
enough to actually dare to do it and of course
(16:31):
implementing it. The practical steps, some of them are not
so difficult, some of them are a little bit more tricky.
But I think if you are a reasonably well informed
person and you have the time I think in particular
this time, and the willingness and the energy to try
to get into this, I think I think many people
(16:51):
will be able to do it. The Internet has galvanized
patients with all sorts of conditions to take a more
hands on approach to their care. For example, there's a
website where people with Crowns disease can share what treatments
have worked for them and what has it. It's sort
of like a patient powered research network. Another site, Patients
like Me, connects people with all kinds of ailments. It's
(17:13):
clear that patients are ready to take a more active
role in their care. Perhaps this is just the next step.
The risks Laura's says seem far less daring when you're
out of options for survival. So I think it's like
a small step in a direction to help show people
that something can be possible. Hank Greeley, a bioethosist at
(17:34):
Stanford and a frequent critic of Josiah's, told me he's
doubtful anything as significant as a cancer treatment will come
from someone's homebrew biolab. I could imagine somebody taking a
rare genetic condition and showing that in a Petrie dish
they can successfully use crisper to to reverse an unfavorable
(17:56):
mutation in a disease that, for whatever reason, by botech
and pharma haven't explored. But making the jump from a
cell line in a Petri dish, which I think bio
hackers might be able to do to a drug and
a human, is such an enormous jump that I think
bio hackers are likely to play only the smallest of
roles in that. Hank isn't all that concerned about Josiahs
(18:19):
Frog experiments, but he is concerned about what it might
lead to. Josiah's public experimentation has already led to copycats.
No one has gotten hurt yet, but they certainly could.
That ceo who injected himself with a herpie's treament on
stage did it without ever testing the treatment and humans first.
A few months later, he drowned, So it's impossible to
(18:40):
say how things might have worked out. But who knows
what might happen when you introduce a foreign substance into
the endlessly complex human body. That day that I visited
Josia's lab, he was planning to inject four frogs with
full s Dowton and four other frogs, the control frogs
with the place of Oh, it was the first phase
(19:02):
of a new experiment. Basically, all you're doing is you're
injecting a liquid and that's it. Like it's that simple,
And I don't think people understand that that, Like, it's
literally that simple you're injecting. He'd already gotten a good
results in one previous experiment. Injecting the frogs with a
different gene also meant stimulating growth. Yeah, so here's a
video that I took. We'll try to show you the frogs.
(19:25):
They're actually this guy is bigger. Now, that's what was
talking about. We call him thick boy because it's our
frog that grew like way bigger than all the other
frogs from the gene therapy. Thick boy, thick with two
cs CA. Okay, it's such an easy experiment to do,
(19:48):
right because there's an obvious way to tell if it's working.
You can weigh the frogs to see and if they
get big enough you can tell by I. Josia is
selling kids to perform these periments online for two that's
including six frogs. His hope is that it teaches people
how fun and simple science can be, and just maybe
(20:11):
that one day, performing such experiments on frogs might empower
people to take their health into their own hands. The
one thing that's important to notice that these genes are
human genes, they're not frog gains. So theoretically, you know,
it's testing like a gene therapy that would be used
in a human but it might not be as easy
(20:31):
as Josiah insists. Here's Hank Greeley again. I think this
idea of having a hobby in science is a good
one in and of itself. For the people involved. I
think there is some chance that they can do some
scientific benefit, which would be good. Um, I do think
(20:52):
that development of human drugs and biological products is not
what they should be focusing on, because I think their
likelihood of contributing significantly, at least in any very direct
way to that is very low. Josiah likes to say
things like, the only thing in the way of creating
(21:13):
cheap d i Y cures is enough people with the
knowledge to do it and the market to pay for it.
Take look start Out. That's the eight fifty dollar gene
therapy that treats blindness. Josiah is pretty sure he could
order stuff off the internet and make it for five dollars.
Another time, he told me he could make dragons if
there were only enough people to pay for it. According
(21:35):
to Josiah, it's all about market demand. That's why it's
so provocative. I interact with a lot of people who
have cancer, and a lot of people who have different
types of cancers that they have no treatment for, and
they're just trying to stay alive and survive. But when
it's their choice between dying and trying something, most people
try something. Well, if they could try it, if they
(21:58):
already had a system, apply form an organism that's been
set up which they could test these things on before
they try to themselves, so that risk of dying is less.
I like, that's a I think a really cool thing.
Josie's approach is extreme, but it's rooted in a concern
sharred well beyond bio hackers. Treatments sometimes take decades to
(22:21):
make it from Petrie dish to patient if it turns
out that is lucrative enough to pursue a treatment at all,
And when a treatment does make it to market, many
people can't afford it. Like, my dream is to get
people to be able to genetically modify themselves, but it's
also to uh. I don't want to say, like take
down the f d A, but figure out a new
(22:41):
model that works, right because right now there are a
ton of people dying and suffering that don't have access
to the drugs they need because of the regulations of time,
the money, I mean everything with the f d A.
How does that Ler used to be an attorney at
the f d A. Now she's a law professor studies
(23:02):
bio hackers, among other things. She told me that self
experimentation or experimenting on frogs might not be enough to
warrant a crackdown from the agency, but it also isn't
necessarily the best way to help people. So from a
public health perspective, if what we care about is helping
people and helping a lot of people, there are lots
(23:22):
of things that are pretty low tech and not very
sexy that we know work. So there are areas of
the country that don't even have clean water, right, so
giving clean water to people in Flint, Michigan and other
areas that would be a huge public health benefit That
isn't as sexy as genetically engineering yourself, um, but it's
something we know would work. And I I am very
(23:44):
interested in this area, and I'm as prone as anyone
to think this is a really exciting thing that jose
I is doing. But they're just all these other things
we know that help people on a large scale. Back
in Josie's lab, I got a good taste of how
easy it is for things to go wrong when you
(24:05):
do it yourself after instructing me in syringe technique. So
put your thumb down there on the bottom right, so
you have some pressure, right, because if you push on
the back when you try to push in, then you
push all the but then how do I push it in?
He asked me if I wanted to give injecting the
frogs to try myself. I'm one of those kids who
asked to be excused from dissecting frogs in high school. Biout,
(24:28):
So I declined, and I'm glad I did because then
this happened. Oh my god, he's like breathing really harding. Actually,
I think I might have got the vein on that
one accidental. What do you do if he's bleeding nothing,
hopefully in heels and he's I think that's just starting
to breathe again or starting to be able to see.
(24:51):
Probably not. We'll sleep. According to Josiah, the frog did survive,
(25:20):
and that's it for this week's prognosis. Thanks for listening.
Do you have a story about healthcare in the US
or around the world. We want to hear from you.
You can email me at m Portes at Bloomberg dot
net or find me on Twitter at bag Portes. If
you were a fan of this episode, please take a
moment to rate and review us. It'll help new listeners
(25:41):
find the show. This episode was produced by Liz Smith,
Our story editor was Rick Shine. Thanks to Drew Armstrong,
francesco Leavia has had a Bloomberg podcast. We'll see you
next week.
Listeners, beware, Later in this podcast we'll be sticking a
needle in a little green frog. We'll also report on
people conducting experiments on themselves. We are not advocating you
try any of this at home. Right right, right right.
(00:25):
What if the tools of modern science were so accessible
that you could cure yourself of your own disease? Welcome
to Prognosis, a podcast about health, medical technology, and the
mind blowing innovation now underway in some of the least
expected places. I'm your host, Michelle fay Cortes. Today we're
(00:48):
taking a peek into the world of bio hacking, where
self taught scientists are experimenting with glow in the dark, beer,
insulin producing yeast, and even do it yourself cures for cancer.
There's a history of scientific innovations shrinking from big, expensive
and inaccessible to personalized and widely used. Just look at
(01:12):
computers in the nineteen seventies. They took up entire rooms
and pretty much only professionals had access to them. Now
millions of people carry pocket sized computers also known as smartphones, everywhere.
A growing contingent of self taught scientists, called biohackers, believe
that healthcare may be following a very similar path. Things
(01:33):
like say, genetic engineering are still the territory of experts,
scientists and universities, pharmaceutical companies, and the government, but so
called biohackers are beginning to experiment a home. So far,
all this community of d I wires has accomplished is
a whole bunch of veiled experiments. There's a guy in
Mississippi that's been trying to make bioluminescent puppies for years.
(01:56):
No glowing dogs yet, and others trying to engineer him
help to grow bigger muscles without having to spend hours
at the gym. He's no more buff than he was
when he started. Probably the most spectacular failure yet was
last February at a conference, the CEO of a bootstrapped
bio hacker startup got up on stage and announced that
(02:17):
he had herpes. Then he stripped down to his boxers
and injected himself with the gene therapy cure that was
almost certain to not work. But these determined bio hackers
are growing in number and in experience. They're sharing ideas
online and off about ways to make science and medicine
more accessible to regular folks. They prophesies one day, Just
(02:39):
like I carry around a computer in my pocket, I
might have the tools in my kitchen to concoct to
cure tailored to my own genetics. Here's Bloomberg's health reporter
Kristin Brown with the story. Recently, I found myself in
(03:02):
a West Oakland duplex watching as a sedated tree frog
got a genetic cocktail injected into its left leg. Hold
it like that, remember, and hold his leg down and
just go into the muscle like that. Inject into the
(03:23):
leg and see its swell a little bit from the fluid.
So you're just injecting one leg. The goal was to
make the frog's muscles grow bigger than usual, to make
the frog get well ripped. To do this, the frog
was getting an injection of a d N a mixture
containing a gene called full of statin, which seems to
(03:45):
play a role in muscle gross So the full of
statin is it Is it likely that it would just
change the one leg or that it would be It's
possible both right, Because they're so small, it can get
into the blood stream really easy, so it's likely that
it can change the whole body. That's our measuring weight.
But Also, when you inject into the muscle, it should
(04:07):
affect that muscle the most. So we're looking at that
muscle to see how that muscle changes, you know, getting
multiple measurements to see what he's done. This guy better.
The mad scientist behind this whole experiment is Josiah Zaner.
I first met Josiah a few years back. He had
(04:29):
just left a job at NASA to start a company
called the Odin, selling cheap science supplies over the Internet
to d I Y bio enthusiasts. Now, Josiah is sort
of a famous science stumpman. He rose to fame after
a talkie gave last year at a biotech conference provocatively
titled A step by step Guide to Genetically Modifying Yourself
(04:50):
with Crisper. Crisper is a much buzzed about gene editing
technology which allows scientists to cut and paste tiny bits
of DNA. To demonstrate how Crisper might are going to
human he injected himself with Crisper right in front of
the audience. I was actually there, and it was pretty crazy.
Crisper had never been used in humans before in the US,
(05:11):
and it certainly hadn't been directly injected into anybody's body.
The stick inspired some copycats, like that CEO Michelle mentioned
who injected himself with a harpies vaccine on stage. It
also caught the attention of the Food and Drug Administration.
The f d A didn't really like that Josiah was
selling kids to would be bio hackers online. Jose I
(05:34):
wanted to usher in a d I y science revolution
by making science seem accessible and edgy, but his tactics
had sort of backfired. You know. At first, I thought, well,
the way we could do this is let's just like
self experimentation. And I tried that and it did not
turn out like I imagined it. So then all right,
let's change, let's try something else. He didn't just want
(05:57):
to grab headlines. He wanted to help people and to
teach people how to do science so that one day
maybe they could help themselves. So last summer, Josiah sent
me a message on Facebook asking me if I had
any interest in learning how to genetically engineer frogs. Josie's mind,
teaching people to experiment on animals was one step closer
(06:17):
to teaching people how to experiment on themselves, which brings
us to August Christ Hello come on in. How's it going.
That's Esther, one of the Odin's employees. Where are the frogs?
Hey here? Oh my gosh, they're so cute. Oh my gosh,
(06:37):
take a look at these ones. These are super adorable.
God just sprouted LIGs. The Odin's headquarters looks a little
like a science e frat live stream video games playing
the background. The fridges stocked with red bull and capri son,
and right now the headquarters is filled with dozens and
(07:00):
dozens of tree frogs, all in various stages of development.
You're the ones have already been experimented on, so we
keep them over here, And these ones have yet to
be experimented or anything on, so we keep them. What
kind of frogs are they again? So they're green tree frogs.
It's high less scen area. They're just like really inexpensive
(07:21):
kind of cool. They look nice and really common, so
that's why we chose them. But Josiah's dream is a
lot bigger than buff amphibians. Within the d i Y biocommunity,
there's a lot of hope that making cutting edge science
more accessible will eventually also make medicine cheaper and more accessible.
Take insulin it's only manufactured by a few pharmaceutical companies
(07:45):
and it's really expensive, but for millions of people, it's
also a life saving medication. So one collective of bio
Hacker is based out of a community bio lab in
Oakland has been working to engineer yeast so that it
produces insulin. The idea is to have ventually develop a
safe and f d A approved method to either allow
people to make their own medicine or at least provided
(08:07):
to diabetics for very cheap. Josiah's first big d i
Y experiment was health related to Since his teen years,
he had been plagued by digestive issues. He had tried
treatment after treatment, but nothing seemed to work. So it
took matters into his own hands. He gave himself a
fecal transplant. Yes, that is exactly what it sounds like,
(08:29):
and he led a reporter write about it. After that,
email started pouring in from other people who were sick
and either frustrated with doctors or out of options. They'd
read stories about things like Crisper and the News and
all its promise of simply snipping away the disease causing
letters in a person's genetic code. They wanted to know
whether there might be a d I Y fix for
(08:50):
them too. Here's where the frogs come in. You can't
be afraid of grabbing them too type they're they're pretty robust.
You you won't. Actually, you gotta like corn them against
the wall and just grab them. I don't want to
hurt them, won't You won't. Don't worry. Oh my god,
they're really get them all right, go in. Oh my god.
(09:23):
It's like literally the hardest part of the whole joes
I experimented on himself to hopefully open people's eyes to
the promise of d I Y science. But he realized
that if you're going to teach people how to make
a geen therapy for themselves, first you have to teach
them how to test it out, in this case on frogs.
To be honest, I found the whole thing pretty creepy.
(09:45):
Before injecting the frogs with anything, Josia knocks them out.
They look limp, like they're dead. They seem like they're
slowing down. Does it work like that? Does it make
them slow down? First? Yep, it's taking in aesthetic right,
so we'll definitely Yeah, they're still going tell of them
go a different pig. Yeah, one of them looks like
(10:05):
he's down already. Over the past few years, genetic engineering
has gotten a lot easier. Josiah actually does have a PhD,
but you don't need one to get your hands on
things like DNA. Jose I ordered the fullest at in
DNA off the Internet, along with everything else for the experiment,
and had it shipped to the office. Then he just
mixes it all up in his lab. So you put
(10:27):
the DNA in these tubes. There's four of them, would
for each frog, and now you're adding the polymer that
will help get into the frog. And then what's next
next is too way and inject them way in measurement
inject There's a long history of self experimentation in science,
(10:55):
and not just in the days before being a scientist
required getting a PhD. Nobel Prize winner Barry James Marshall
ingested a type of bacteria to successfully demonstrate its role
in causing ulcers sometimes though it wasn't so successful. Way
back in the twenties, Russian physician Alexander Bogdanov performed multiple
blood transfusions on himself. He wanted to test whether the
(11:18):
procedure might bring him eternal youth. Instead, it killed him.
But Josiah doesn't just imagine a world where such self
experimentation is done by the brave and the daring. He
wants a world we're whipping up a d i Y
gene therapy no longer seems daring at all, considering where
the science is now. That is a pretty radical vision. True.
(11:42):
Modern day genetics have made curing many ones in curable
diseases seem for the first time realistic. One gene therapy Externa,
approved last year, treats the form of inherited blindness, but
most therapies are still highly experimental and the abilities of
the technology are still really limit it. I've talked with
a lot of other people on science and medicine about
(12:03):
Josiah's work, and most of them are pretty skeptical. But
if you or your loved one is sick, Josia's vision
is a pretty compelling one, no matter how dubious it sounds.
That's exactly how Lara's Saurus felt when his wife Diane
was diagnosed with stage four lung cancer, and she was
only thirty years old and had never smoked. No one
(12:25):
knows why she got the disease at such a young age,
but it seemed genetics may have played a role. The
from bolt is very very poor, and we at the
beginning we were just told there is there's not any hope.
You can perhaps delayed the inevitable a little bit, but
not much, and there's really no hope at no point
(12:45):
in trying to fight too much against its better to
just enjoy your last days together and then that's going
to be it. But Lars did not give up. Instead,
he scoured the world and the Internet for promising treatments.
He eventually stumbled upon a professor in Germany involved in
an experimental personalized PEP died vaccine project and experimental immunotherapy.
(13:07):
Laras and Diane live in Norway, so Germany isn't all
that far. Immunotherapy is hot, and for good reason. The
medical literature is filled with tales of tumors suddenly shrinking
to nothing and terminal illness is miraculously reversing course. It's
a very interesting and scientifically intriguing way of attacking cancer
(13:28):
self uh and definitely still unproven and of course even
more unproven two years uh two years ago when she
started this. But we hope and believe that it can
be helpful against her cancer, but there's certainly no proof
that it will be. Diane was traveling to Germany every
two weeks for treatment, as well as adding new things
(13:50):
for her treatment regimen when they seem promising. Somewhere along
the way, a friend Saint Law is an article about Josiah,
so Laura's reached out curious about whether a d I
crisper treatment might work for Diane. Josiah told him it
probably wouldn't, but the two out of talking it led
to a plan to make cancer metotherapy more accessible by
making a d I y. Laura's had a blog where
(14:14):
he detailed all of the different treatments that Diane was
trying out. Like Josiah, patients often reached out to Laura's
after reading it. It was impossible to tell whether any
of Diane's experimental treatments were actually working, but she was
at least still alive and doing well, and the people
are reaching out and they asked it they could perhaps
to try the same thing, But then some people didn't
(14:36):
have the necessary funding to do it, and other people
were perhaps precluded from probably every second week to Germany.
So so then the question was, you know, are the
other ways that people can get this type of treatment
without traveling every second second week to Germany, without spending
the small fortune we have done. So, Laura start a
(15:00):
Facebook group called d I Y Cancer Vaccines. On Facebook,
people with the same diagnosis as Diane could discuss their treatment,
along with the possibility of making a cancer immunotherapy themselves.
The idea of making an immunotherapy wasn't completely impossible. For
a few thousand dollars, anyone can contract a lab to
manufacture a targeted peptide like Dianes. Everything else can be
(15:23):
found at a local pharmacy or online. It's promising, but
these immunotherapies are also highly experimental. There was a chance
that they could result in devastating side effects or just
altogether not work. Not to mention, it would be extraordinarily
expensive to d I y a vaccine that targeted as
many mutations as Diannes did. That would make the chances
(15:46):
of it working even slimmer. Still, as a Facebook community grew,
a few people decided to try out making the vaccine themselves.
One fell in Norwegian tried her homebrew vaccine on her husband,
who would run out of chance after his cancer had
spread to his brain. It didn't work, but Lars was inspired.
(16:09):
Last year, with help from Josiah, he published an online
guide for how to make an immunotherapy targeting a single
mutation in a councers tumor. I think the individual steps
by themselves are not so difficult, but there is a
herd life thing, both in comprehension like do you understand
enough to actually dare to do it and of course
(16:31):
implementing it. The practical steps, some of them are not
so difficult, some of them are a little bit more tricky.
But I think if you are a reasonably well informed
person and you have the time I think in particular
this time, and the willingness and the energy to try
to get into this, I think I think many people
(16:51):
will be able to do it. The Internet has galvanized
patients with all sorts of conditions to take a more
hands on approach to their care. For example, there's a
website where people with Crowns disease can share what treatments
have worked for them and what has it. It's sort
of like a patient powered research network. Another site, Patients
like Me, connects people with all kinds of ailments. It's
(17:13):
clear that patients are ready to take a more active
role in their care. Perhaps this is just the next step.
The risks Laura's says seem far less daring when you're
out of options for survival. So I think it's like
a small step in a direction to help show people
that something can be possible. Hank Greeley, a bioethosist at
(17:34):
Stanford and a frequent critic of Josiah's, told me he's
doubtful anything as significant as a cancer treatment will come
from someone's homebrew biolab. I could imagine somebody taking a
rare genetic condition and showing that in a Petrie dish
they can successfully use crisper to to reverse an unfavorable
(17:56):
mutation in a disease that, for whatever reason, by botech
and pharma haven't explored. But making the jump from a
cell line in a Petri dish, which I think bio
hackers might be able to do to a drug and
a human, is such an enormous jump that I think
bio hackers are likely to play only the smallest of
roles in that. Hank isn't all that concerned about Josiahs
(18:19):
Frog experiments, but he is concerned about what it might
lead to. Josiah's public experimentation has already led to copycats.
No one has gotten hurt yet, but they certainly could.
That ceo who injected himself with a herpie's treament on
stage did it without ever testing the treatment and humans first.
A few months later, he drowned, So it's impossible to
(18:40):
say how things might have worked out. But who knows
what might happen when you introduce a foreign substance into
the endlessly complex human body. That day that I visited
Josia's lab, he was planning to inject four frogs with
full s Dowton and four other frogs, the control frogs
with the place of Oh, it was the first phase
(19:02):
of a new experiment. Basically, all you're doing is you're
injecting a liquid and that's it. Like it's that simple,
And I don't think people understand that that, Like, it's
literally that simple you're injecting. He'd already gotten a good
results in one previous experiment. Injecting the frogs with a
different gene also meant stimulating growth. Yeah, so here's a
video that I took. We'll try to show you the frogs.
(19:25):
They're actually this guy is bigger. Now, that's what was
talking about. We call him thick boy because it's our
frog that grew like way bigger than all the other
frogs from the gene therapy. Thick boy, thick with two
cs CA. Okay, it's such an easy experiment to do,
(19:48):
right because there's an obvious way to tell if it's working.
You can weigh the frogs to see and if they
get big enough you can tell by I. Josia is
selling kids to perform these periments online for two that's
including six frogs. His hope is that it teaches people
how fun and simple science can be, and just maybe
(20:11):
that one day, performing such experiments on frogs might empower
people to take their health into their own hands. The
one thing that's important to notice that these genes are
human genes, they're not frog gains. So theoretically, you know,
it's testing like a gene therapy that would be used
in a human but it might not be as easy
(20:31):
as Josiah insists. Here's Hank Greeley again. I think this
idea of having a hobby in science is a good
one in and of itself. For the people involved. I
think there is some chance that they can do some
scientific benefit, which would be good. Um, I do think
(20:52):
that development of human drugs and biological products is not
what they should be focusing on, because I think their
likelihood of contributing significantly, at least in any very direct
way to that is very low. Josiah likes to say
things like, the only thing in the way of creating
(21:13):
cheap d i Y cures is enough people with the
knowledge to do it and the market to pay for it.
Take look start Out. That's the eight fifty dollar gene
therapy that treats blindness. Josiah is pretty sure he could
order stuff off the internet and make it for five dollars.
Another time, he told me he could make dragons if
there were only enough people to pay for it. According
(21:35):
to Josiah, it's all about market demand. That's why it's
so provocative. I interact with a lot of people who
have cancer, and a lot of people who have different
types of cancers that they have no treatment for, and
they're just trying to stay alive and survive. But when
it's their choice between dying and trying something, most people
try something. Well, if they could try it, if they
(21:58):
already had a system, apply form an organism that's been
set up which they could test these things on before
they try to themselves, so that risk of dying is less.
I like, that's a I think a really cool thing.
Josie's approach is extreme, but it's rooted in a concern
sharred well beyond bio hackers. Treatments sometimes take decades to
(22:21):
make it from Petrie dish to patient if it turns
out that is lucrative enough to pursue a treatment at all,
And when a treatment does make it to market, many
people can't afford it. Like, my dream is to get
people to be able to genetically modify themselves, but it's
also to uh. I don't want to say, like take
down the f d A, but figure out a new
(22:41):
model that works, right because right now there are a
ton of people dying and suffering that don't have access
to the drugs they need because of the regulations of time,
the money, I mean everything with the f d A.
How does that Ler used to be an attorney at
the f d A. Now she's a law professor studies
(23:02):
bio hackers, among other things. She told me that self
experimentation or experimenting on frogs might not be enough to
warrant a crackdown from the agency, but it also isn't
necessarily the best way to help people. So from a
public health perspective, if what we care about is helping
people and helping a lot of people, there are lots
(23:22):
of things that are pretty low tech and not very
sexy that we know work. So there are areas of
the country that don't even have clean water, right, so
giving clean water to people in Flint, Michigan and other
areas that would be a huge public health benefit That
isn't as sexy as genetically engineering yourself, um, but it's
something we know would work. And I I am very
(23:44):
interested in this area, and I'm as prone as anyone
to think this is a really exciting thing that jose
I is doing. But they're just all these other things
we know that help people on a large scale. Back
in Josie's lab, I got a good taste of how
easy it is for things to go wrong when you
(24:05):
do it yourself after instructing me in syringe technique. So
put your thumb down there on the bottom right, so
you have some pressure, right, because if you push on
the back when you try to push in, then you
push all the but then how do I push it in?
He asked me if I wanted to give injecting the
frogs to try myself. I'm one of those kids who
asked to be excused from dissecting frogs in high school. Biout,
(24:28):
So I declined, and I'm glad I did because then
this happened. Oh my god, he's like breathing really harding. Actually,
I think I might have got the vein on that
one accidental. What do you do if he's bleeding nothing,
hopefully in heels and he's I think that's just starting
to breathe again or starting to be able to see.
(24:51):
Probably not. We'll sleep. According to Josiah, the frog did survive,
(25:20):
and that's it for this week's prognosis. Thanks for listening.
Do you have a story about healthcare in the US
or around the world. We want to hear from you.
You can email me at m Portes at Bloomberg dot
net or find me on Twitter at bag Portes. If
you were a fan of this episode, please take a
moment to rate and review us. It'll help new listeners
(25:41):
find the show. This episode was produced by Liz Smith,
Our story editor was Rick Shine. Thanks to Drew Armstrong,
francesco Leavia has had a Bloomberg podcast. We'll see you
next week.
Host
Jason Gale
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