0:01

Welcome to steph you missed in History

0:03

Class from how Stuff Works dot Com.

0:12

Hello, and welcome to the podcast. I'm

0:14

Tracy B. Wilson and I'm

0:16

Holly Fry. Today

0:19

we are talking about one of the modern

0:22

world's most infamous incidents

0:24

of unethical medical research. It

0:27

is the Tuskegee Syphilis Study, which

0:29

started in nineteen thirty two and ran

0:31

until nineteen seventy two. The

0:34

studies researchers told its participants

0:36

that they were being treated for syphilis,

0:39

but in reality they were not, and

0:41

the entire point of the study was actually

0:44

to observe how untreated

0:46

syphilis progressed in black men. So

0:49

this study itself was part of

0:51

a much greater pattern in medical history

0:53

of white doctors conducting unethical

0:56

studies, experiments, and procedures

0:58

on minority patients. In

1:00

terms of black patients, this pattern includes

1:02

the work of Jay Maryan Sims, who's known

1:04

as the Father of gynecology, who

1:06

conducted surgeries on enslaved

1:08

women without anesthesia. You can

1:11

hear more about that in our sister

1:13

podcast, Stuff Mom Never Told You in

1:15

the episode The Mothers of Gynecology.

1:18

It also includes the use of cancer

1:20

cells taken from Henrietta Lax without

1:22

her consent, which you can learn about in Rebecca

1:24

Sclute's exceptional book, The Immortal Life

1:27

of Henrietta Lax. But as we

1:29

discussed in our teen podcast on

1:31

the Doctor's Riot of sevent this

1:33

pattern even continued after death,

1:36

with grave robbers overwhelmingly using

1:38

black cemeteries as their source for

1:40

medical cadavers. Apart

1:43

from its deeply unethical setup,

1:45

the Tuskeee Study had real and

1:47

damaging effects that continued long

1:49

after it was over all of which we will

1:51

talk about today. So

1:55

to give you a brief primer on syphilis,

1:57

Syphilis is a diseased caused by the bacteria

2:00

um Treponema politum.

2:02

And while there are other similar diseases in the

2:04

same family that are spread through casual

2:06

contact, syphilis is spread through

2:09

sexual activity. It can also

2:11

move through the placenta during pregnancy, leading

2:13

to congenital syphilis in newborn babies.

2:17

There are several hypotheses about

2:19

where this disease first originated. We

2:22

know for sure that it was present in the

2:24

America's prior to Christopher Columbus's

2:26

first voyage, So the most popular

2:29

explanation and it was that it was carried back

2:31

to Europe on Columbus's ships in and

2:34

then it spread really rapidly from there

2:36

because the population had no immunity

2:38

to it. There are also other theories

2:41

that syphilis was already present outside

2:43

the America's at that point, but was more dike

2:45

misdiagnosed as leprosy, which is now

2:47

known as Hanson's disease, and this

2:50

second theory the disease evolved

2:52

to become more virulent in the fifteenth

2:55

century, and it was coincidentally

2:57

after Columbus's first voyage. In

2:59

a first stage, syphilis presents

3:02

as a sore on the location where

3:04

the bacteria entered the body. That

3:06

sore usually goes away within three to six

3:08

weeks, even if it's untreated, but the

3:11

disease at that point is not cured. It

3:13

typically returns in a second stage,

3:15

marked by a rash that's sometimes

3:17

the only symptom, but it can also be accompanied

3:20

by swollen lymph nodes, fever, fatigue,

3:23

achiness, and general symptoms of

3:25

being unwell. Those

3:27

symptoms also resolve without treatment.

3:31

From there, syphilis goes into a latent

3:33

phase when it's not treated and there are no symptoms

3:36

at all. Sometimes that lasts for the

3:38

rest of the person's life, but for

3:40

up to thirty percent of people who don't

3:42

receive treatment, syphilis enters a

3:45

very serious tertiary phase

3:47

ten to thirty years after the initial infection.

3:50

This stage can affect multiple parts of

3:52

the body, including the heart and brain.

3:55

Third third stage syphilis can

3:57

cause large sores on the body, blindness,

4:00

mental disorders, destruction of

4:02

bone and soft tissue, paralysis,

4:05

organ failure, and death. It's

4:09

primarily this third, debilitating,

4:11

disfiguring, and deadly phase that

4:13

shows up in art and literature, as

4:15

well as in explanations for the brutal

4:18

or erratic behaviors of various monarchs,

4:20

including even the Terrible. Regardless

4:24

of whether syphilis was really present

4:26

outside the America's prior to free

4:29

as it spread through the fifteenth century and

4:31

beyond, it became really heavily

4:33

stigmatized. People quickly

4:35

understood that it was spread through sexual

4:37

contact, and that meant that in many cultures

4:40

and religions it was associated with sinfulness

4:42

and immoral behavior. Folklore

4:45

about the origin of syphilis also

4:47

frequently connected it to Hanson's disease,

4:50

and that disease is also heavily

4:53

stigmatized and then culturally associated

4:55

with sin and with being quote unclean.

4:58

Syphilis was so rever vial that nations

5:01

named it after whichever country they thought

5:03

it came from, so in Italy,

5:05

Germany, and the British Isles it was the

5:07

French disease, but in France it

5:09

was the Neapolitan disease. Russia

5:12

blamed Poland, and Poland blamed

5:14

Germany. In some places, different

5:17

religions took the blame, with Hindus

5:19

and Muslims each blaming each other in northern

5:22

India. Compounding

5:24

all of the layers of stigma was the fact

5:27

that there wasn't a very effective treatment

5:29

available for syphilis until the twentieth

5:31

century. Physicians tried a

5:33

range of herbs, compounds, and practices,

5:36

and by the sixteenth century, the most common

5:38

treatment was mercury, which was

5:40

highly toxic and not particularly effective.

5:43

In eighteen eighty four, doctors started

5:46

using business salts, which were less toxic

5:48

and somewhat more effective than mercury,

5:50

but still only offered a cure about thirty

5:53

percent of the time, and that was

5:55

after months of difficult treatment that had

5:57

high rates of side effects, including death

6:00

and arsenic derivative known as compounds

6:02

six oh six, was developed in nineteen

6:04

O nine and that was apparently effective,

6:07

although it was difficult to administer and

6:09

it could cause tissue damage and death

6:12

if it were given improperly. I

6:14

try to find some real solid information

6:16

about how effective compounds six oh

6:18

six was. It was apparently

6:21

hailed as a miracle, but

6:24

since it was replaced relatively

6:26

quickly and far far enough

6:28

in the past that we don't have a lot of evidenced

6:30

based medical data about it, I'm

6:32

not quite sure whether it was as effective as people

6:35

build it as at the time. The

6:37

reason it was replaced pretty quickly was that in

6:40

ninety eight Alexander Fleming

6:42

discovered the antibiotic penicillin,

6:44

which was far far safer for

6:46

treating anything, but particularly

6:48

syphilis, than compounds made from

6:51

toxic metals are. It became

6:53

a standard treatment for syphilis intree

6:56

and this synopsis we've given is

6:58

really an overview. If you weren't to know more

7:00

about the history of syphilis treatment,

7:03

check out the saw Bones episode on syphilis

7:05

from March of In

7:07

the mid nineteen twenties, in the United States,

7:10

syphilis was a public health crisis.

7:13

Conservative estimates put the rate of infection

7:15

at ten to fifteen percent, but

7:17

estimates go as high as thirty five percent

7:19

of those people of reproductive age.

7:22

A nine nine study of rural Alabama

7:25

counties had found that it was particularly

7:27

high in Macon County, Alabama, home

7:30

of the Tuskegee Institute. The

7:32

Tuskegee Institute, which is now Tuskegee

7:35

University, was founded on July fourth,

7:37

eighty one as Tuskegee Normal

7:39

School for Colored Teachers. A

7:42

normal school was a teacher's college,

7:44

and Tuskegee was established after the state

7:46

of Alabama passed legislation

7:48

that authorized its creation. Tuskegee's

7:51

first teacher was Dr Booker T. Washington.

7:54

It became an independent institution of higher

7:56

learning. The Tuskegee Normal and Industrial

7:59

Institute in Tuskegee

8:02

became home to more than just the university.

8:04

In nine three, it opened the Tuskegee

8:07

v A Hospital to provide long term

8:09

care for black veterans. It was

8:11

also home to the Tuskegee Airman's flight

8:13

training program in World War Two. There's

8:16

actually an episode on them in our archive

8:18

from past hosts Candice and Jayne. The

8:22

research on untreated syphilis

8:24

that we're talking about today was conducted

8:27

by the US Public Health Service,

8:29

but it took place at Tuskegee Institute,

8:31

with the involvement of some of the staff there,

8:34

and we were going to talk about it after a quick

8:36

sponsor break. The

8:43

Tuskegee study was not the only one in

8:45

history to observe untreated syphilis.

8:48

For example, a study at the Oslo Venereal

8:50

Clinic in Norway withheld treatment

8:53

from nearly two thousand patients between

8:55

eighteen ninety and nineteen ten. That

8:58

clinics chief doctor was convinced

9:01

pretty understandably so that the syphilis

9:03

treatments available at the time were actually

9:06

worthless. To protect the rest

9:08

of the community from the spread of infection during

9:10

the study, the Oslo team kept the participants

9:13

hospitalized until they were symptom free.

9:16

The Oslo study found that for about seventy

9:18

of the patients, once the disease reached

9:21

a latent phase, they had no further

9:23

problems and they weren't contagious. But

9:25

for the other thirty percent, the tertiary

9:28

stage followed and it was serious and

9:30

severe. Once compound

9:32

six oh six was introduced. The Oslo study

9:34

was ended. The study had demonstrated

9:37

that untreated syphilis could be serious

9:39

or deadly, making it unethical to

9:41

withhold and effective though risky treatment

9:44

once it was available. Yeah,

9:46

there are plenty of other ethical

9:48

questions about this study. It's it's

9:51

complicated by the fact that the doctor

9:54

running the study was correct and the fact that the

9:56

treatments that were available were not actually doing much.

9:59

But study did stop once there was a treatment

10:02

that people did think actually worked available

10:04

to them. So this Oslo

10:06

study was one of two that informed the Tuskegee

10:09

syphilis study. The other was

10:11

the study we referred

10:13

to before the break. That one was a U

10:15

S Public Health service study as well,

10:17

and it was paid for by the Rosenwald Fund. It

10:20

was undertaken with the goal of figuring

10:22

out whether a mass syphilis treatment

10:25

program would be feasible or successful

10:27

in rural areas, and its findings suggested

10:29

that yes, a mass treatment program would.

10:32

Unfortunately, also

10:35

saw the start of the Great Depression. Funding

10:38

for a mass treatment program for black patients

10:40

with a sexually transmitted disease already

10:42

would have been incredibly difficult to find,

10:44

but with the Great Depression it became impossible.

10:47

The Rosenwald study and its optimistic

10:49

conclusions about the success of a treatment

10:52

program fell by the wayside,

10:54

But in nineteen thirty two, Dr Talia

10:57

Faro Clark, chief of the U s Public

10:59

Health serve A Spunereal Disease Division,

11:01

who had actually authored that study,

11:04

returned to those results with an idea for another

11:07

approach. This would be a counterpoint

11:09

to the previous OSLO study, which had been

11:12

on white subjects, Theorizing

11:14

that syphilis progressed differently among

11:16

black patients than white patients, Clark

11:18

decided to take advantage of the high rate of syphilis

11:21

infection in Making County and

11:23

observe how the disease progressed when

11:25

left untreated in black men over

11:27

a period of six months. Underpinning

11:31

this plan were a set of racist stereotypes

11:33

about black men, their sexual behavior,

11:36

and their supposed lack of interest in

11:38

or compliance with medical treatment. Basically

11:42

was the idea was that if these men weren't

11:44

going to get treated anyway, the medical

11:46

community might as well observe what happened

11:48

when they didn't. Clark called this

11:50

a quote ready made situation to

11:53

conduct quote a study in Nature.

11:56

As a side note, the racism

11:58

threaded through this study did not end with

12:01

the stereotypes that were framing how

12:03

the white medical establishment was approaching

12:05

it. It's not really a matter of a

12:07

set of implicit biases that were guiding

12:10

them in such a strange and horrifying

12:12

direction. The correspondence

12:15

of the studies white doctors with one

12:17

another are laced with incredibly

12:19

racist attitudes and views. They

12:22

are gross. Every

12:24

time I would find another quotation from

12:26

one of them, I would get angrier,

12:29

because they are really really

12:32

offensive. US

12:35

Surgeon General Hugh Smith Coming then

12:37

contacted our our Moten, director

12:39

of the Tuskegee Institute, to enlist the

12:41

institute's help, calling the proposed

12:44

study a quote an unparalleled

12:46

opportunity for carrying on this piece of

12:48

scientific research which probably cannot

12:50

be duplicated anywhere else in the world.

12:54

In that same letter, Coming said the study

12:56

could have quote a marked bearing on

12:58

the treatment or conversely, the

13:00

non necessity of treatment in cases

13:02

of latent syphilis. The

13:05

Tuskegee Institute ultimately agreed

13:08

to cooperate, and later in ninety

13:10

two, doctor Raymond Vanderler began

13:12

trying to recruit black men with syphilis

13:14

who were between the ages of twenty five and sixty

13:17

for the study. He ran into

13:19

difficulty really quickly when he

13:21

advertised the study was open to

13:23

men with a minimum age of twenty five people

13:26

can suspected that he was actually

13:28

there conducting draft physicals,

13:30

and nobody came so. Even though

13:32

the study was only to be done on men, the

13:34

initial physicals were conducted on women

13:37

as well. Another hiccup

13:39

was that the prevalence of syphilis in Macon

13:41

County was not as high as the Rosenwald

13:43

study had suggested. The Public

13:46

Health Service had expected an infection rate

13:48

of thirty five percent, but once

13:50

Vonderler was actually testing subjects,

13:52

that rate turned out to be more like and

13:56

completely contrary to the stereotype

13:58

that the men being studied were innately unlikely

14:00

to go to the doctor, they found that a

14:02

lot of Macon County residents had already seen

14:04

a doctor for syphilis and received treatment.

14:08

Also contrary to the prevailing

14:10

stereotypes, overwhelmingly,

14:13

the men that Wonderler approached about this study

14:15

were only willing to participate if

14:18

participating would result in their

14:20

being treated, so this idea that

14:22

was guiding their entire study

14:25

approach. This idea that black men were

14:27

unlikely to seek treatment was completely

14:30

unfounded. When faced

14:32

with this dilemma, the doctors involved

14:34

with the study lied. They

14:36

told participants they had bad blood

14:39

and that they were being treated for that then

14:42

to keep up the deception that participants

14:44

were given ineffective quote treatments

14:46

like mercury, ointments, aspirin, and

14:49

actual drugs that were at too low a dose

14:51

to be effective in any way.

14:54

Bad blood was used to describe syphilis,

14:56

but was also kind of a catch all term

14:59

for other diseases as

15:01

well. Regardless,

15:03

it was referred to pretty consistently as bad

15:05

blood when talking to the patients who were part

15:07

of this study. The

15:10

doctors also described spinal

15:12

taps more accurately called lumbar

15:14

punctures as treatment, even

15:17

though a spinal tap is not a treatment. Uh

15:20

they were they were being used to diagnose whether

15:22

the men had neuro syphilis, whether they had

15:24

the syphilis infection in their their

15:27

brain and their nervous system tissue.

15:30

Because spinal taps are uncomfortable

15:33

and they carry risks of complications and

15:35

side effects, these were scheduled

15:37

last in the physical exams with the hope

15:39

that word of their unpleasantness

15:41

would not spread and lead people to

15:43

drop out of the study because they were going to have to have a spinal

15:46

tap. When it was time for the

15:48

spinal taps, the participants got a letter

15:50

that read quote some time ago, you

15:52

were given a thorough examination, and

15:55

since that time, we hope you've gotten

15:57

a great deal of treatment for bad blood.

16:00

You will now be given your last chance to get

16:02

a second examination. This examination

16:05

is a very special one, and after it is

16:07

finished, you will be given a special

16:09

treatment if it is believed you're in a

16:12

condition to stand it. This

16:14

language makes me so angry. I've

16:17

never had a spinal tap, but

16:19

I drove my mom, my mom back

16:21

and forth to the doctor for at least one,

16:24

because she has a neurological condition.

16:26

They're rough, unpleasant,

16:29

is like, that's the nice word the doctor

16:32

will say to you. Yeah, I have not had

16:34

one either. I have had both friends and

16:36

relatives that have had them. I witnessed

16:38

one of them. It was horrifying.

16:41

Um. Once the study

16:44

reached the end of its original planned

16:46

six months, the United States

16:48

Public Health Service decided to continue

16:50

it indefinitely. In

16:52

spite of the fact that the subjects had defied their

16:54

expectations regarding whether they would seek

16:56

treatment, they still believed that it was quote

16:58

natural to keep this study going. The

17:01

researchers came to believe that they would need to conduct

17:04

autopsies, not just examine

17:06

living patients in order to get

17:08

a clear picture of how untreated syphilis

17:10

progressed. This changed

17:13

the scope of a study added a further layer

17:15

of deception. In addition

17:17

to keeping secret the fact that the men were

17:20

not being treated for syphilis, the doctors

17:22

had to also keep secret that they never

17:24

would be and the autopsies

17:27

were kept secret as well, because they

17:29

were concerned that subjects would leave the study

17:31

if they found out they would have to be autopsied

17:34

after they died. Only

17:36

after the US Public Health Service approved

17:39

this indefinite extension to the study did

17:41

the team decide it should also have a control

17:44

group, and they recruited men who

17:46

were syphilis free. If

17:48

any contracted syphilis during the course

17:50

of the study, they were then moved to the test group.

17:53

In the end, there were three hundred and ninety

17:56

nine men in the test group and two hundred

17:58

and one men in the control group. This

18:01

is the least of the problems with the study.

18:04

But moving somebody from your control group into your

18:06

test group is not That's not how it's supposed

18:08

to happen. That's not good science. That's

18:10

a bad methodology. Like

18:12

I said, that is the tiniest

18:15

of the problems here. So, like

18:18

we said earlier, a

18:21

person has who has a latent syphilis infection

18:23

can be symptom free for their whole life. And

18:25

suspecting that the men would probably drop

18:28

out of the study after for a while if they continued

18:30

to be symptom free and they weren't seeing any

18:32

benefit to this treatment, the Public

18:34

Health Service also offered a number of incentives

18:37

to keep people involved. Subjects

18:39

received transportation to and from the Tuskegee

18:42

Institute for their medical exams, as well as

18:44

a hot meal on a day. They were

18:46

allowed to stop in town to run errands

18:48

or visit friends. Afterward, if they

18:50

got sick with something besides syphilis, they

18:52

got medical care for free. Uh,

18:55

the area where this was taking

18:57

place was pretty impoverished.

18:59

A lot of the people in the study where sharecroppers

19:02

and people who had a very subsistence level of living.

19:04

So all of these incentives did make the study

19:07

really appealing for people to participate in.

19:10

But that still had the complicated question of the autopsy.

19:14

Knowing that it would be unlikely to secure

19:16

permission to have an autopsy done

19:18

if the subject died somewhere other

19:21

than the hospital, the Public

19:23

Health Service offered about fifty dollars

19:25

per person and burial expenses

19:27

to encourage people to come into the hospital

19:29

and be admitted. If they became ill that way,

19:31

they would pass away in the hospital and

19:33

it would make it easier to conduct their autopsy.

19:37

Keeping the study going also required

19:39

the Tuskegee team to collude with health

19:41

professionals elsewhere and for incoming

19:43

directors and officers in the public health

19:46

service to maintain this deception through

19:48

multiple changes in administration. They

19:51

gave lists of participants to doctors

19:53

in Making County, to the Alabama Health

19:55

Department, and to the Draft Board to make

19:58

sure none of them treated or reckon ended

20:00

treatment to the participants. Apart

20:03

from the fact that they were literally convincing

20:06

other doctors to withhold appropriate care,

20:08

they were also violating participants privacy

20:11

by disclosing to a whole lot of

20:13

other doctors that they had syphilis.

20:17

Now conceived as a lifelong effort,

20:19

the Tuskegee study also needed a liaison

20:22

between its medical team and its subjects,

20:24

and someone to basically ensure the continuity

20:26

of care for as long as the study lasted.

20:30

That liaison was Nurse Unice Rivers

20:32

Laurie, known as Nurse Rivers for nearly

20:34

all of the studies duration because she got married

20:37

later on in her life. A graduate

20:39

of the Tuskegee Institute's nursing program,

20:42

Nurse Laurie was an experienced public health

20:44

nurse. There are

20:46

a number of contradictory truths about

20:49

Nurse Laurie's work, which lasted until

20:51

the study ended, even after she officially

20:53

retired. She was an active

20:55

participant in the medical team's deception

20:58

of the studies subjects. As liaison

21:00

between the doctors and the community, she

21:02

was possibly the most instrumental in

21:04

getting the men to stick with the study and follow

21:07

the doctor's instructions. The

21:09

more social community aspects of the study

21:11

became known as MS. Rivers Lodge.

21:14

At the same time, she was caring for men

21:16

she knew who were part of her community,

21:19

including as they became ill, suffered,

21:21

and died as a result of their untreated

21:24

syphilis. A lot

21:26

of the depictions of

21:29

of Unice River's larry are

21:31

either that she was basically

21:34

a helpless victim of

21:36

a Jim Crow era South herself

21:40

uh or that she was like

21:42

an evil participant in

21:45

this completely racist

21:47

and unethical study. These

21:50

are all things that are multiple, Like the things we

21:52

just said are all true at the same

21:54

time. Right. It's rarely as

21:57

as simple and easy to quantify

21:59

in one statement when you're dealing with a situation

22:01

like this as

22:03

hero or villain, good or bad,

22:06

there are there are layers and layers

22:09

to the whole thing. Yeah,

22:11

there's actually a hbo

22:14

Um movie called

22:16

Miss Evers Boys that is a fictionalized

22:18

account of this. That's basically a

22:20

fictionalized version of her story. One

22:23

of the things that we don't have much of it much

22:25

of is uh documentation

22:28

from her about

22:30

how she framed this for

22:33

herself, or about how she

22:35

approached a lot of the huge ethical

22:38

concerns that were part of her work.

22:41

Um So, I think a lot

22:43

of the things that portray her as either a

22:46

total unwilling person

22:49

with no agency or

22:52

a complete villain like neither of those seems

22:54

like a an accurate picture. Unlike

22:59

in the Oslo study, which ended when

23:01

compound six or six became available, the

23:03

Tuskegee Study started after compound

23:06

six or six was already out. It

23:08

continued for another twenty nine

23:10

years after penicillin became the

23:13

standard treatment for syphilis. When

23:15

the study ended, only seventy four of its subjects

23:17

were still living, and the number who had

23:19

died as a consequence of their untreated

23:22

syphilis is unclear. It

23:24

was at least twenty eight but possibly

23:27

more than a hundred. The number

23:29

of people who contracted syphilis

23:31

as the result of this study,

23:34

which was telling them that they were being treated when

23:36

they really were not, is unknown,

23:39

and the damaging effects of the study

23:41

didn't stop when the study stopped.

23:44

In July of a

23:46

National Bureau of Economic Research working

23:48

paper reported that when the study

23:51

became publicly known in nine two,

23:54

it led to increases in both mistrust

23:56

of the medical community and immortality

23:59

within the black community. The paper

24:01

estimates that for black men at the age

24:03

of forty five when the study was exposed,

24:06

life expectancy dropped by almost

24:08

a year and a half, contributing to up

24:10

tot of the disparity

24:13

in life expectancy between black and white

24:15

men as of nineteen eighty. And

24:17

to be clear, that is everywhere

24:20

in the United States, not just in Tuskegee,

24:22

Alabama. Like that's that. This

24:25

this, the fact that the study existed

24:28

ah appears

24:31

to have led to bad

24:33

health outcomes, especially for

24:35

black men, ongoing for

24:38

decades after the study was over. We

24:41

will talk about how this study came to light and what happened

24:43

afterward after another quick sponsor break.

24:51

Although this study, which was ultimately

24:53

known as the Tuskegee Study of Untreated

24:56

Syphilis and the Negro Mail, was

24:58

highly deceptive, was

25:00

not in any way secret findings

25:03

were published and presented repeatedly,

25:05

beginning at the American Medical Association

25:08

annual meeting in nineteen thirty six.

25:10

At least fifteen different papers

25:13

on it were published out

25:15

in public for people to see

25:17

over the duration. Even

25:20

though these reports consistently

25:22

detailed serious and damaging consequences

25:25

of untreated syphilis, that alone

25:28

was never enough to stop the study.

25:30

A meeting at the Centers for Disease Control

25:33

about whether to continue the study, at which

25:35

some of the participants of that of

25:38

that meeting did criticize it as

25:40

being an ethical they ultimately approved

25:43

the study to go on, and that was in nineteen

25:45

sixty nine. Then

25:47

in July of nineteen seventy two,

25:49

The New York Times in the Washington Post published

25:52

an associated Press article called Syphilis

25:55

Victims in US Study went Untreated

25:58

for forty Years by Gan

26:00

Heller. And it was this report

26:02

and the outrage that followed that finally

26:04

brought about the end of the study. That

26:07

report was possible thanks to a whistleblower. Also

26:10

following the studies end, uh We're

26:12

congressional hearings and a class action

26:14

lawsuit filed by civil rights attorney Fred

26:17

Gray that ended in a ten million

26:19

dollar out of court settlement. The

26:21

United States government established the Tuskegee

26:24

Health Benefit Program to pay for medical

26:26

care and burials of the participants,

26:28

whose wives and children were later added to

26:30

the program as well. The Department

26:33

of Health, Education, and Welfare also

26:35

formed an advisory panel to evaluate

26:37

the study, eventually ruling that it was

26:39

quote ethically unjustified.

26:43

Seventy one of the survivor's medical

26:45

records were released in the nineties seventies.

26:48

That's less than twenty of those who had been

26:50

part of the studies infected group.

26:53

At that point. It was discovered that at least

26:55

a portion of the participants did wind

26:57

up receiving at least some penicillin

27:00

sometime between when it became the standard

27:02

treatment for syphilis and the end

27:04

of the study. A

27:06

lot of the people who did wind up

27:08

getting some penicillin during the course the

27:10

study were treated by two doctors,

27:13

Dr Murray Smith, of the Making County Health Department

27:15

and doctor Eugene Dibble at the Tuskegee

27:18

Institute's Johnny Andrew Hospital. They

27:21

both prescribed penicillin to people

27:23

who were in the test group as a treatment

27:26

for other conditions, including colds,

27:28

flu, and back pain. It's

27:30

completely unclear whether this was an accidental

27:32

oversight of the fact that these men were

27:34

in the studies test group, or if

27:37

it was an intentional and covert

27:39

way to treat them for syphilis without

27:41

raising the red flag from the people

27:43

running the study. Others

27:46

were able to receive treatment after moving

27:48

away from Tuskegee, at which point either

27:50

the Public Health Service lost track of them

27:53

or the doctors at their new home refused

27:55

to withhold treatment from them in spite of the

27:57

study staff's attempts to convince them

27:59

otherwise. Is On

28:02

May sixteenth, President

28:04

Bill Clinton issued an apology

28:06

for the study on the behalf of the government, specifically

28:09

naming the eight men in the study who

28:12

were at that point still living Carter

28:14

Howard, Frederick Moss, Charlie

28:16

Pollard, Herman Shaw, Fred

28:18

Simmons, Sam Donner, Ernest

28:21

Hendon, and George Key.

28:23

Five of the men were present at this apology

28:26

and the three who could not attend were

28:28

represented by members of their family. The

28:31

last surviving participant of the study

28:33

died in two thousand four. There's

28:36

a widespread and very persistent

28:38

piece of misinformation that the men

28:40

in the study were deliberately infected

28:42

with syphilis. This, based

28:44

on all the information available, is completely

28:47

untrue. There was, however,

28:49

a completely different US Public Health

28:51

Service study conducted in Guatemala

28:53

in the nineteen forties which did

28:56

indeed infected subjects with sexually

28:58

transmitted infections on purpose.

29:01

That was actually uncovered while the researcher

29:04

was looking for information about

29:07

the Tuskegee study, and they happened to

29:09

find this isn't like two thousand and five, not that

29:11

long ago, happened to find documents about

29:13

this Guatemala study um that

29:15

definitely did infect people

29:18

with sexually transmitted diseases. Another

29:20

piece of misinformation that's followed the study

29:23

and is it's a piece of misinformation

29:25

and yet it's responsible for important

29:28

work. Is that its main

29:30

flaws where it's failure to get

29:32

participants informed consents, and

29:35

that the withholding of the penicillin

29:37

once it was available it was an

29:39

ethical But these are really kind

29:41

of beside the point, compound

29:44

six oh six was available as a syphilis

29:46

treatment before the study even started.

29:48

So even though penicillin was a lot safer

29:51

and had a lot fewer side effects and I think

29:53

probably a lot more effective, had trouble

29:55

answering that question specifically.

29:58

It wasn't like there was no treatment and then

30:00

they continued the study after

30:03

treatment was available, Like there was a treatment available

30:05

from the beginning, from the very start, and the point

30:07

was always to withhold treatment. Uh,

30:10

the failure to get informed

30:13

consent from the participants, it's

30:15

also really secondary to the fact that the

30:17

study every step of the way

30:19

was intentionally about deceiving

30:21

people into participating and

30:24

then withholding a treatment for a treatable

30:26

illness without their knowledge for decades.

30:29

Yeah, the idea of informed consent, Yes,

30:31

that is really important. I am

30:34

glad that such, uh, such

30:36

a focus on informed consent followed

30:39

this particular study. Like there's even

30:42

a bioethics center at Tuskegee Institute

30:44

now in part as a response to the study.

30:46

All of that is super duper important, But

30:49

like, informed consent not

30:51

really the biggest problem

30:54

in a study that was literally, we're

30:56

going to lie to people and withhold

30:58

an available treatment for decades

31:01

until they die, and then we will conduct

31:03

an autopsy on their body and see what happened when

31:05

like we already knew, we already knew what happened,

31:09

which was that untreated syphilis can kill

31:11

you, Like we knew that stuff already. So

31:14

well, I always wonder when

31:16

we're any time we're talking about things

31:19

like this, this one in particular, because

31:21

it's recent enough and it's in the South, that I

31:24

feel like, you know, I know the kinds of people who may

31:26

have been employed in in a place

31:28

like that, And I'm like, what kind of mental gymnastics

31:31

were some of these people having to do with themselves

31:33

to be like, no, no, we have to keep doing this, yeah,

31:37

because at some point your brain raises

31:39

a flag and goes, hey, this is not okay, this

31:41

is maybe bad. Well, and that's especially

31:45

like from the first publications there

31:47

were people who could kind of went, hey, uh,

31:50

this seems wrong, and

31:52

the study continued in spite of the

31:54

criticism saying, hey, this seems wrong. Um,

31:57

in spite of the you know, for the whole time.

32:01

Um. There are also people who will bring up the fact

32:03

that, like, uh, Eunice

32:05

River's Larie was black, and some of the

32:08

doctors at the Tusky Institute who were

32:10

participating in like allowing this to happen

32:12

on the Tusky Institute campus. We're

32:15

also black, and like people will try to

32:18

wrap their mind around that in such a way

32:20

of being like, well, it must have been okay if there were black

32:22

people involved in this treatment on black

32:24

No, that's not that's not correct

32:27

at all. Uh, And that is really

32:31

every time I've seen that argument, it's been

32:33

basically an attempt to derail that Yes,

32:35

this was awful, it was wrong,

32:38

and it was racist, and it

32:40

has continued to have damaging

32:43

effects continuing

32:45

probably until today.

32:48

Yeah, I mean, like you said, the thing is right,

32:51

Like, you can't track really

32:53

the depth and resonance

32:56

of what this created. Because these

32:58

are people that we're getting treated, some of whom

33:00

were presumably sexually active that

33:03

probably passed it on to other people. We

33:06

don't know where the ripples go from there, you

33:08

know what I mean. There's so many lives that can

33:10

be affected in this sort of

33:12

echoing horrible nous

33:15

that well, and then then when the news

33:17

came out about it, everything was compounded

33:19

with the fact of, like, these were doctors

33:21

who people knew and trusted and in some cases

33:24

had been seeing for years and people had

33:26

been seeing uh Nurse

33:28

Rivers later known

33:30

as Nurse Larry, like they had been seeing her for

33:32

years, she had been taking care of them for years,

33:34

and people were like, how can I ever trust another

33:37

doctor ever again? And how can I trust the

33:39

government ever again? Like there

33:41

was there were definitely

33:43

causes to mistrust the medical establishment

33:45

and the government before that point, but

33:47

this was such an immediate and visceral

33:50

response that I think it has carried

33:53

through for generations. Yeah,

33:56

and you you can't fault someone at that point

33:58

for having no faith in

34:01

in uh, you know, the

34:03

medical treatments available to them

34:05

or the medical professionals available to them, which

34:07

stinks. It's such a disservice to the rest of the

34:09

medical community. Like in addition to

34:12

the people that were being victimized

34:15

by this horrible study, obviously

34:17

we feel ways about this, uh

34:20

And I laugh, not not to make light of it, but

34:22

just to uh, to to laugh

34:24

at how embroiled in

34:26

our hearts it becomes. Yeah, I've

34:28

researched a lot of really

34:30

horrible, horrifying, horrifying

34:34

episodes on this show, and like this is one

34:36

of the hardest ones to me. Yeah,

34:41

uh, what's the listener male situation?

34:43

It's not a much lighter a much lighter

34:46

note than this. It's also a throwback to

34:48

an episode that was from a while ago. This

34:50

is from Shelley. Shelley says, Hi, Holly and Tracy.

34:53

She has introduction to us and some thank

34:55

you, and then she says, I recently listened to the podcast

34:57

about Hildegarde up being in how

35:00

Over. I quickly realized that I must have mistaken

35:02

this Hilleguard for a different of the same name

35:04

that I'm familiar with. No worries, I'm game

35:06

for an adventure in learning. I learned from

35:08

the two of you about her church training and her choice

35:10

to be an anchorous and then I hear it her musical

35:12

training again. You mentioned her lyric poems

35:15

and hymns and the musical lines ago with them.

35:17

This is why I tuned into the podcast. So

35:19

this podcast really made me scratch my head. I

35:21

have a master's degree in music and Hildegard

35:24

is a huge part of our music history courses.

35:26

That you only mentioned her musical contributions

35:28

in passing and then in all capital

35:30

letters with an exclamation point. This is crazy.

35:33

I had no idea about any of her journeys

35:36

in life. Sure I knew she was a religious

35:38

gal as most Western music of

35:40

the Middle Ages of liturgical in origin, but

35:42

I had no clue of the extent of her religious commitments.

35:45

I was inspired to go through some of my old music

35:47

history books and brush up on Hildegard, and sure

35:49

enough, the extent of her religious involvements

35:52

are not mentioned much. There

35:54

are two sentences that describe her visions. Quote,

35:57

during moments that we might today identify

36:00

as severe migraine headaches, she heard voices

36:02

and saw visions accompanying accompanied

36:04

by great fashion flashes of light, a serpent

36:06

like Satan devouring pedals of a scarlet rose,

36:08

or the blood of Christ streaming

36:11

in the heavens, for example. And that was from

36:13

right sims Uh music

36:15

and Western civilization. They

36:18

later credit those visions with her quote

36:21

extremely colorful visions in her music. The

36:23

music industry is a male dominated arena,

36:26

but Hildegard was crashing through the glass ceilings

36:28

in the eleventh century. She left many

36:30

chants preserved in her symphonia, as well as

36:32

her liturgical drama Ordo virtue

36:34

Um, the first religious opera I recently

36:36

recommended your podcast to a friend of mine. I got

36:38

her hooked with the Haunted Management episodes and being

36:41

a musician a college music professor on her

36:43

own, she also picked up Hildegard to Being

36:45

In for a listen. She almost turned the episode

36:47

off because she thought it was the wrong Hildegard. Hildegarden

36:49

to Being In is a staple and every trained musician's

36:52

curriculum, every conservatory school

36:54

and Department of music student has had

36:56

a listening and content test on her.

36:58

She's a really big deal in bold

37:00

with an exclamation point. After discussing

37:02

this and being truly astonished the lack of music

37:05

mentioned in your episode, we laughed it off.

37:07

I'm inspired by what an astonished, astonishing

37:09

woman she was. Thank you, ladies for this was

37:12

truly something I missed in history class. Keep up the

37:14

great work, Shelly. Thank

37:16

you for the note. Shelly. I had an

37:18

interesting response to this email,

37:21

which is that, uh, what seems

37:23

weird to me is to have um

37:26

a focus on Hilly Guard Hildy Guard that is

37:29

solely on her music because

37:32

her religious instruction and upbringing and

37:35

the fact that she was able able

37:37

I mean I say able and quotation marks. Her parents

37:39

literally gave her to the church, possibly

37:41

as part of the tithe Like

37:43

all of those things are how she was

37:45

even able to have a

37:48

body of music as part of her work

37:51

because she was devoting her life

37:54

to God and living in

37:57

a monastic setting. So

37:59

it is strange to me, Like, it doesn't surprise

38:02

me that people who have a music history

38:04

degree would know about Hildegard

38:07

primarily through her music, But she

38:09

did a lot of other things besides

38:11

right music. Um, she was also

38:14

shattering glass ceilings in terms of her

38:16

writing, and in terms of her religious instructions

38:18

of other people, and in terms of like

38:21

uh founding, um,

38:25

like founding a religious community of women.

38:27

So uh, yeah,

38:29

it doesn't surprise me that music

38:32

instruction would focus primarily on her music,

38:34

but like that's definitely not the only

38:36

thing, or I would even argue the core thing about

38:38

Hildegard in her life and work. Yeah, if

38:41

you would like to write to us about this or any other

38:43

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38:46

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38:48

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38:50

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38:52

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38:54

miss in history. You can have

38:56

to our parent company's website, which is how stuff

38:59

Works dot com and find all kinds of information

39:01

about cool stuff. You can come to our website,

39:03

which is missed in History dot com, and you will find

39:05

show notes to the episodes Holly and I

39:08

have done in an archive of every episode.

39:10

Ever. We also have four videos

39:12

we made and those are all on our website too, So

39:15

we can do all that and a whole lot more at how stuff

39:17

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39:24

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