0:01

Listeners, beware, Later in this podcast

0:03

we'll be sticking a needle in a little green

0:05

frog. We'll also report on people

0:08

conducting experiments on themselves. We

0:10

are not advocating you try any of

0:12

this at home. Right

0:17

right, right right.

0:25

What if the tools of modern science

0:28

were so accessible that you could

0:30

cure yourself of your own disease? Welcome

0:35

to Prognosis, a podcast

0:37

about health, medical technology,

0:39

and the mind blowing innovation now underway

0:42

in some of the least expected places.

0:45

I'm your host, Michelle fay Cortes.

0:48

Today we're taking a peek into the world of bio

0:50

hacking, where self taught scientists

0:53

are experimenting with glow in the dark, beer,

0:55

insulin producing yeast, and even

0:58

do it yourself cures for cancer. There's

1:05

a history of scientific innovations shrinking

1:07

from big, expensive and inaccessible

1:09

to personalized and widely used.

1:12

Just look at computers in the nineteen seventies.

1:15

They took up entire rooms and pretty

1:17

much only professionals had access to them.

1:19

Now millions of people carry pocket sized computers

1:22

also known as smartphones, everywhere.

1:25

A growing contingent of self taught scientists,

1:27

called biohackers, believe that healthcare

1:29

may be following a very similar path. Things

1:33

like say, genetic engineering are

1:35

still the territory of experts, scientists

1:37

and universities, pharmaceutical companies,

1:40

and the government, but so called biohackers

1:42

are beginning to experiment a home. So

1:45

far, all this community of d I wires has accomplished

1:47

is a whole bunch of veiled experiments.

1:51

There's a guy in Mississippi that's been trying

1:53

to make bioluminescent puppies

1:55

for years. No glowing dogs

1:57

yet, and others trying to engineer him

2:00

help to grow bigger muscles without

2:02

having to spend hours at the gym. He's

2:04

no more buff than he was when he started. Probably

2:07

the most spectacular failure yet was

2:09

last February at a conference,

2:12

the CEO of a bootstrapped bio hacker

2:14

startup got up on stage and

2:16

announced that he had herpes. Then

2:18

he stripped down to his boxers and injected

2:20

himself with the gene therapy cure that was almost

2:23

certain to not work. But

2:25

these determined bio hackers are growing in number

2:28

and in experience. They're sharing

2:30

ideas online and off about ways

2:33

to make science and medicine more accessible

2:35

to regular folks. They prophesies

2:38

one day, Just like I carry around a

2:40

computer in my pocket, I might have the

2:42

tools in my kitchen to concoct to cure

2:44

tailored to my own genetics. Here's

2:47

Bloomberg's health reporter Kristin Brown with the

2:49

story.

3:00

Recently, I found myself in a West

3:02

Oakland duplex watching as

3:04

a sedated tree frog got a genetic

3:07

cocktail injected into its left leg.

3:11

Hold it like that, remember, and

3:15

hold his leg down and

3:17

just go into the muscle like that. Inject

3:22

into the leg and see its swell

3:25

a little bit from the fluid. So

3:27

you're just injecting one leg. The

3:32

goal was to make the frog's muscles grow bigger

3:34

than usual, to make the frog get well

3:37

ripped. To do this, the

3:39

frog was getting an injection of a d N a mixture

3:41

containing a gene called full of statin, which

3:44

seems to play a role in muscle gross So

3:48

the full of statin is it

3:51

Is it likely that it would just change the

3:53

one leg or that it would be It's

3:56

possible both right, Because they're so small,

3:59

it can get into the blood stream really easy, so it's likely

4:01

that it can change the whole body. That's our measuring weight.

4:04

But Also, when you inject into the muscle,

4:07

it should affect that muscle the most. So we're

4:09

looking at that muscle to see how that muscle

4:11

changes, you know, getting multiple

4:13

measurements to see what he's done.

4:16

This guy better. The

4:22

mad scientist behind this whole experiment

4:24

is Josiah Zaner. I

4:27

first met Josiah a few years back. He had

4:29

just left a job at NASA to start a company

4:31

called the Odin, selling cheap science

4:33

supplies over the Internet to d I Y bio

4:36

enthusiasts. Now,

4:39

Josiah is sort of a famous science

4:41

stumpman. He rose to fame after a

4:43

talkie gave last year at a biotech conference

4:45

provocatively titled A step by

4:47

step Guide to Genetically Modifying

4:49

Yourself with Crisper. Crisper

4:52

is a much buzzed about gene editing technology

4:54

which allows scientists to cut and paste tiny

4:57

bits of DNA. To demonstrate

4:59

how Crisper might are going to human he

5:01

injected himself with Crisper right

5:03

in front of the audience. I

5:05

was actually there, and it was pretty crazy.

5:08

Crisper had never been used in humans before

5:10

in the US, and it certainly hadn't

5:13

been directly injected into anybody's

5:15

body. The stick

5:17

inspired some copycats, like

5:20

that CEO Michelle mentioned who injected himself

5:22

with a harpies vaccine on stage. It

5:25

also caught the attention of the Food and Drug

5:27

Administration. The f d A didn't

5:29

really like that Josiah was selling kids to would

5:32

be bio hackers online. Jose

5:34

I wanted to usher in a d I y science revolution

5:37

by making science seem accessible and

5:39

edgy, but his tactics had sort

5:41

of backfired. You know. At

5:43

first, I thought, well, the way we could do

5:45

this is let's just like self

5:48

experimentation. And I tried

5:50

that and it did not turn out like I

5:52

imagined it. So then all right, let's

5:54

change, let's try something else. He

5:56

didn't just want to grab headlines. He

5:58

wanted to help people and to teach

6:00

people how to do science so that one day

6:02

maybe they could help themselves. So

6:05

last summer, Josiah sent me a message

6:07

on Facebook asking me if I had any

6:09

interest in learning how to genetically engineer

6:11

frogs. Josie's

6:14

mind, teaching people to experiment on animals

6:16

was one step closer to teaching people

6:18

how to experiment on themselves, which

6:21

brings us to August Christ

6:24

Hello come on in. How's

6:26

it going. That's Esther, one of the

6:28

Odin's employees. Where

6:30

are the frogs? Hey here?

6:34

Oh my gosh, they're

6:36

so cute. Oh my gosh, take a look at these

6:38

ones. These are super adorable.

6:43

God just sprouted

6:45

LIGs. The

6:48

Odin's headquarters looks a little like a

6:50

science e frat live stream video

6:52

games playing the background. The fridges stocked

6:54

with red bull and capri son, and

6:57

right now the headquarters is filled with

6:59

dozens and dozens of tree frogs,

7:01

all in various stages of development. You're

7:04

the ones have already been experimented on, so

7:07

we keep them over here, And these ones have

7:09

yet to be experimented or anything on, so

7:11

we keep them. What kind

7:13

of frogs are they again? So they're green tree

7:15

frogs. It's high less scen area.

7:18

They're just like really inexpensive

7:21

kind of cool. They look nice

7:23

and really common, so that's why

7:25

we chose them. But Josiah's

7:28

dream is a lot bigger than buff amphibians.

7:31

Within the d i Y biocommunity, there's

7:33

a lot of hope that making cutting edge science

7:35

more accessible will eventually also

7:38

make medicine cheaper and more accessible.

7:40

Take insulin it's only manufactured

7:43

by a few pharmaceutical companies and

7:45

it's really expensive, but for millions

7:47

of people, it's also a life saving

7:49

medication. So one collective

7:51

of bio Hacker is based out of a community bio

7:54

lab in Oakland has been working to engineer

7:56

yeast so that it produces insulin. The

7:59

idea is to have ventually develop a safe

8:01

and f d A approved method

8:03

to either allow people to make their own medicine

8:06

or at least provided to diabetics for very

8:08

cheap. Josiah's

8:10

first big d i Y experiment was health

8:12

related to Since his teen years,

8:14

he had been plagued by digestive issues. He

8:17

had tried treatment after treatment, but nothing

8:19

seemed to work. So it took matters into

8:21

his own hands. He

8:23

gave himself a fecal transplant. Yes,

8:26

that is exactly what it sounds like, and

8:29

he led a reporter write about it. After

8:32

that, email started pouring in from

8:34

other people who were sick and either frustrated

8:36

with doctors or out of options. They'd

8:39

read stories about things like Crisper and the News

8:41

and all its promise of simply snipping away

8:44

the disease causing letters in a person's genetic

8:46

code. They wanted to know whether there

8:48

might be a d I Y fix for them too.

8:51

Here's where the frogs come in. You

8:55

can't be afraid of grabbing them too type they're

8:57

they're pretty robust. You you won't. Actually,

9:00

you gotta like corn them against the wall and just grab

9:02

them. I don't

9:04

want to hurt them, won't You won't. Don't worry. Oh

9:06

my god, they're really get

9:11

them

9:14

all right, go

9:17

in. Oh

9:20

my god. It's

9:24

like literally the hardest part of the

9:26

whole joes I experimented

9:28

on himself to hopefully open people's

9:30

eyes to the promise of d I Y science.

9:33

But he realized that if you're going to teach people how

9:35

to make a geen therapy for themselves, first

9:37

you have to teach them how to test it out, in

9:39

this case on frogs. To

9:41

be honest, I found the whole thing pretty

9:44

creepy. Before injecting the frogs

9:46

with anything, Josia knocks them out. They

9:48

look limp, like they're dead. They

9:51

seem like they're slowing down. Does

9:53

it work like that? Does it make them slow down?

9:55

First? Yep, it's taking in aesthetic

9:57

right, so we'll definitely

10:00

Yeah, they're

10:02

still going tell of them go a different pig. Yeah,

10:05

one of them looks like he's down already. Over

10:07

the past few years, genetic engineering

10:09

has gotten a lot easier. Josiah

10:12

actually does have a PhD, but

10:14

you don't need one to get your hands on things like DNA.

10:17

Jose I ordered the fullest at in DNA off the Internet,

10:19

along with everything else for the experiment, and

10:22

had it shipped to the office. Then he just

10:24

mixes it all up in his lab. So

10:27

you put the DNA in these tubes.

10:29

There's four of them, would for each frog, and

10:31

now you're adding the polymer that will

10:33

help get into the frog. And

10:37

then what's next next

10:40

is too way and inject

10:42

them way in measurement inject There's

10:52

a long history of self experimentation

10:54

in science, and not just in the days

10:56

before being a scientist required getting a

10:58

PhD. Nobel Prize

11:00

winner Barry James Marshall ingested a type

11:02

of bacteria to successfully demonstrate its

11:05

role in causing ulcers

11:07

sometimes though it wasn't so successful.

11:11

Way back in the twenties, Russian

11:13

physician Alexander Bogdanov performed multiple

11:15

blood transfusions on himself.

11:17

He wanted to test whether the procedure might bring him

11:19

eternal youth. Instead, it

11:22

killed him. But Josiah

11:24

doesn't just imagine a world where such self experimentation

11:27

is done by the brave and the daring. He

11:30

wants a world we're whipping up a d i Y gene

11:32

therapy no longer seems daring at all,

11:36

considering where the science is now. That

11:38

is a pretty radical vision.

11:41

True. Modern day genetics have made

11:43

curing many ones in curable diseases seem

11:46

for the first time realistic. One

11:48

gene therapy Externa, approved last

11:51

year, treats the form of inherited blindness,

11:54

but most therapies are still highly

11:56

experimental and the abilities of the technology

11:59

are still really limit it. I've talked

12:01

with a lot of other people on science and medicine

12:03

about Josiah's work, and most of them are

12:05

pretty skeptical. But if you

12:07

or your loved one is sick, Josia's vision

12:10

is a pretty compelling one, no matter

12:12

how dubious it sounds. That's

12:15

exactly how Lara's Saurus felt when

12:17

his wife Diane was diagnosed with stage

12:19

four lung cancer, and she

12:21

was only thirty years old and had never smoked.

12:24

No one knows why she got the disease at such a young

12:26

age, but it seemed genetics may have played

12:29

a role. The from

12:31

bolt is very very poor,

12:33

and we at the beginning we were just told

12:35

there is there's not any hope. You

12:38

can perhaps delayed

12:40

the inevitable a little bit, but not much,

12:42

and there's really no hope at

12:44

no point in trying to fight too

12:46

much against its better to just enjoy

12:49

your last days together and then that's

12:51

going to be it. But Lars did

12:53

not give up. Instead, he scoured

12:56

the world and the Internet for promising treatments.

12:58

He eventually stumbled upon a professor in Germany

13:01

involved in an experimental personalized

13:03

PEP died vaccine project and

13:05

experimental immunotherapy. Laras

13:07

and Diane live in Norway, so Germany

13:10

isn't all that far. Immunotherapy

13:12

is hot, and for good reason. The

13:14

medical literature is filled with tales of tumors

13:16

suddenly shrinking to nothing and terminal

13:19

illness is miraculously reversing

13:21

course. It's a very interesting

13:23

and scientifically intriguing

13:26

way of attacking cancer

13:28

self uh and definitely

13:31

still unproven and of course

13:33

even more unproven two years uh

13:36

two years ago when she started this. But

13:39

we hope and believe that it can

13:41

be helpful against her cancer,

13:43

but there's certainly no proof that

13:45

it will be. Diane was traveling to Germany

13:48

every two weeks for treatment, as well as adding

13:50

new things for her treatment regimen when they seem promising.

13:53

Somewhere along the way, a friend Saint Law is

13:55

an article about Josiah, so Laura's

13:58

reached out curious about whether a d I

14:00

crisper treatment might work for Diane. Josiah

14:03

told him it probably wouldn't, but

14:05

the two out of talking it led

14:07

to a plan to make cancer metotherapy more accessible

14:10

by making a d I y. Laura's

14:13

had a blog where he detailed all of the different

14:16

treatments that Diane was trying out. Like

14:18

Josiah, patients often reached out to Laura's

14:20

after reading it. It was impossible

14:22

to tell whether any of Diane's experimental treatments

14:25

were actually working, but she

14:27

was at least still alive and doing well,

14:30

and the people are reaching out and they asked it they

14:33

could perhaps to try the same thing, But then

14:35

some people didn't have the necessary

14:38

funding to do it, and other people were

14:40

perhaps precluded from probably every

14:42

second week to Germany. So so

14:45

then the question was, you know, are the other ways that

14:47

people can get

14:49

this type of treatment without traveling

14:52

every second second week to Germany,

14:54

without spending the small fortune

14:57

we have done. So,

14:59

Laura start a Facebook group called d

15:02

I Y Cancer Vaccines. On

15:04

Facebook, people with the same diagnosis

15:06

as Diane could discuss their treatment, along

15:09

with the possibility of making a cancer immunotherapy

15:11

themselves. The idea of making an

15:13

immunotherapy wasn't completely impossible.

15:17

For a few thousand dollars, anyone can contract

15:19

a lab to manufacture a targeted peptide

15:21

like Dianes. Everything else can

15:23

be found at a local pharmacy or online.

15:27

It's promising, but these immunotherapies

15:29

are also highly experimental. There

15:32

was a chance that they could result in devastating

15:34

side effects or just altogether not

15:36

work. Not to mention, it

15:38

would be extraordinarily expensive to d

15:40

I y a vaccine that targeted

15:43

as many mutations as Diannes did. That

15:45

would make the chances of it working even slimmer.

15:49

Still, as a Facebook community grew,

15:51

a few people decided to try out making the vaccine

15:54

themselves. One fell

15:56

in Norwegian tried her homebrew vaccine on

15:58

her husband, who would run out of chance

16:00

after his cancer had spread to his brain. It

16:03

didn't work, but

16:07

Lars was inspired. Last year,

16:09

with help from Josiah, he published an online

16:12

guide for how to make an immunotherapy targeting

16:14

a single mutation in a councers tumor.

16:18

I think the individual steps by

16:20

themselves are not so difficult, but there

16:23

is a herd life thing, both in comprehension

16:26

like do you understand enough to actually

16:29

dare to do it and of course

16:31

implementing it. The practical steps, some of them

16:33

are not so difficult, some of

16:35

them are a little bit more tricky. But I think

16:37

if you are a reasonably

16:40

well informed

16:42

person and you have the time I

16:44

think in particular this time, and the willingness and the

16:46

energy to try to

16:49

get into this, I think I think

16:51

many people will be able to do it. The

16:53

Internet has galvanized patients with all

16:55

sorts of conditions to take a more hands

16:57

on approach to their care. For example,

17:00

there's a website where people with Crowns disease

17:02

can share what treatments have worked for them

17:05

and what has it. It's sort of like a patient

17:07

powered research network. Another

17:09

site, Patients like Me, connects people

17:11

with all kinds of ailments. It's

17:13

clear that patients are ready to take a more

17:15

active role in their care. Perhaps

17:18

this is just the next step. The risks

17:21

Laura's says seem far less daring

17:23

when you're out of options for survival. So

17:26

I think it's like a small step in

17:28

a direction to help show people that something

17:30

can be possible. Hank

17:32

Greeley, a bioethosist at Stanford

17:34

and a frequent critic of Josiah's, told

17:37

me he's doubtful anything as significant as

17:39

a cancer treatment will come from someone's homebrew

17:41

biolab. I could imagine

17:44

somebody taking a rare genetic

17:46

condition and showing that in a

17:49

Petrie dish they can successfully

17:52

use crisper to to reverse

17:55

an unfavorable mutation in

17:57

a disease that, for whatever reason, by

18:00

botech and pharma haven't explored.

18:02

But making the jump from a cell line in a Petri

18:05

dish, which I think bio hackers might be able

18:07

to do to a drug and a human,

18:09

is such an enormous jump that

18:12

I think bio hackers are likely to play only

18:15

the smallest of roles in that. Hank

18:17

isn't all that concerned about Josiahs Frog experiments,

18:20

but he is concerned about what it might

18:22

lead to. Josiah's public experimentation

18:25

has already led to copycats. No

18:27

one has gotten hurt yet, but they certainly

18:30

could. That ceo who injected himself

18:32

with a herpie's treament on stage did it without

18:34

ever testing the treatment and humans first.

18:37

A few months later, he drowned, So it's

18:39

impossible to say how things might have worked out.

18:42

But who knows what might happen when you introduce

18:44

a foreign substance into the endlessly

18:46

complex human body. That

18:52

day that I visited Josia's lab, he was

18:54

planning to inject four frogs with full

18:56

s Dowton and four other frogs, the control

18:58

frogs with the place of Oh, it

19:01

was the first phase of a new experiment.

19:04

Basically, all you're doing is you're injecting a liquid

19:07

and that's it. Like it's that simple, And

19:09

I don't think people understand that that, Like, it's

19:11

literally that simple you're injecting. He'd already gotten

19:13

a good results in one previous experiment. Injecting

19:16

the frogs with a different gene also meant stimulating

19:18

growth. Yeah, so here's a video

19:22

that I took. We'll

19:24

try to show you the frogs. They're actually

19:26

this guy is bigger. Now, that's what was

19:28

talking about. We call him thick boy because

19:31

it's our frog that grew like way

19:34

bigger than all the other frogs from the gene therapy.

19:36

Thick boy,

19:40

thick with two cs CA. Okay,

19:46

it's such an easy experiment to do, right because there's

19:48

an obvious way to tell if it's

19:50

working. You can weigh the frogs

19:53

to see and if they get big enough

19:55

you can tell by I. Josia

19:58

is selling kids to perform these periments

20:00

online for two

20:03

that's including six frogs. His

20:05

hope is that it teaches people how fun and

20:07

simple science can be, and

20:10

just maybe that one day, performing such

20:12

experiments on frogs might empower people

20:14

to take their health into their own hands. The

20:17

one thing that's important to notice that these genes are human

20:19

genes, they're

20:21

not frog gains. So theoretically,

20:25

you know, it's testing like a gene

20:27

therapy that would be used in a human but

20:30

it might not be as easy as Josiah

20:32

insists. Here's Hank Greeley again.

20:35

I think this idea of having

20:38

a hobby in science is

20:41

a good one in and of itself.

20:43

For the people involved. I think there is

20:45

some chance that they can do some scientific

20:47

benefit, which would be good.

20:50

Um, I do think that development

20:53

of human drugs and biological

20:55

products is

20:58

not what they should be focusing on, because

21:00

I think their likelihood of contributing

21:02

significantly, at least in any very direct

21:05

way to that is very low. Josiah

21:10

likes to say things like, the only

21:12

thing in the way of creating cheap d i

21:14

Y cures is enough people with the knowledge

21:16

to do it and the market to pay for it.

21:18

Take look start Out. That's the eight

21:21

fifty dollar gene therapy that treats

21:23

blindness. Josiah is pretty

21:25

sure he could order stuff off the internet and

21:27

make it for five dollars. Another

21:30

time, he told me he could make dragons if

21:32

there were only enough people to pay for it. According

21:35

to Josiah, it's all about market demand.

21:38

That's why it's so provocative. I

21:42

interact with a lot of people who have cancer,

21:44

and a lot of people who have different types of cancers

21:46

that they have no treatment for, and they're just trying to stay alive

21:49

and survive. But when it's

21:51

their choice between dying and trying something,

21:54

most people try something. Well,

21:56

if they could try it, if they

21:58

already had a system, apply form

22:01

an organism that's been set up which they could

22:03

test these things on before they try to themselves,

22:06

so that risk of dying is less. I

22:08

like, that's a I think a really

22:11

cool thing. Josie's

22:14

approach is extreme, but it's rooted

22:16

in a concern sharred well beyond bio hackers.

22:19

Treatments sometimes take decades to make

22:21

it from Petrie dish to patient if

22:23

it turns out that is lucrative enough to pursue a

22:26

treatment at all, And when a treatment

22:28

does make it to market, many people can't

22:30

afford it. Like, my dream is

22:32

to get people to be able to genetically modify

22:35

themselves, but it's also to uh. I

22:37

don't want to say, like take down the f d

22:40

A, but figure out a new model

22:42

that works, right because

22:44

right now there are a ton of people dying

22:47

and suffering that don't have access to the drugs

22:49

they need because

22:52

of the regulations of time, the money,

22:55

I mean everything with the f d A. How

22:58

does that Ler used to be an attorney at the f d A.

23:00

Now she's a law professor studies bio hackers,

23:03

among other things. She told me

23:05

that self experimentation or experimenting

23:07

on frogs might not be enough to warrant a

23:09

crackdown from the agency, but

23:11

it also isn't necessarily the best way to help

23:14

people. So from a public health

23:16

perspective, if what we

23:18

care about is helping people and

23:20

helping a lot of people, there are lots

23:22

of things that are pretty low tech

23:25

and not very sexy that we know

23:27

work. So there are areas of the country that don't

23:30

even have clean water, right, so giving clean

23:32

water to people in Flint, Michigan and other areas

23:35

that would be a huge public health benefit

23:37

That isn't as sexy as genetically engineering

23:39

yourself, um, but it's something we know

23:42

would work. And I I am

23:44

very interested in this area, and I'm as prone

23:46

as anyone to think this is a really exciting

23:48

thing that jose I is doing. But they're

23:51

just all these other things we know that help people

23:53

on a large scale. Back

24:00

in Josie's lab, I got a good taste

24:02

of how easy it is for things to go wrong

24:04

when you do it yourself after

24:06

instructing me in syringe technique. So

24:09

put your thumb down there on the bottom right,

24:11

so you have some pressure, right,

24:13

because if you push on the back when

24:16

you try to push in, then you push all the

24:18

but then how do I push it in? He asked

24:20

me if I wanted to give injecting the frogs to try

24:22

myself. I'm one of those

24:24

kids who asked to be excused from dissecting

24:26

frogs in high school. Biout, So I

24:29

declined, and I'm glad I did

24:31

because then this happened. Oh

24:34

my god, he's like breathing really

24:36

harding. Actually,

24:39

I think I might have got the vein on that one accidental. What

24:42

do you do if he's bleeding nothing, hopefully

24:44

in heels and he's I

24:46

think that's just starting to breathe again

24:49

or starting to be able to see. Probably

24:52

not. We'll sleep.

24:57

According to Josiah, the frog

24:59

did survive, and

25:20

that's it for this week's prognosis. Thanks

25:22

for listening. Do you have a story about

25:24

healthcare in the US or around the world.

25:27

We want to hear from you.

25:29

You can email me at m Portes at

25:31

Bloomberg dot net or find me on Twitter

25:34

at bag Portes. If

25:36

you were a fan of this episode, please take

25:38

a moment to rate and review us. It'll

25:40

help new listeners find the show. This

25:43

episode was produced by Liz Smith, Our

25:45

story editor was Rick Shine. Thanks

25:47

to Drew Armstrong, francesco

25:49

Leavia has had a Bloomberg podcast. We'll

25:52

see you next week.