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Sounds, music, radio, podcasts.

1:02

This is my dad's wedding album and

1:05

Albert stood next to him because we knew him

1:07

as Albert. We didn't call him James, we all

1:10

called him Albert. Meet

1:12

cousins Sandra and June. They both live

1:14

in Workington, in Cumbria, just a few

1:16

streets away from each other. I've

1:20

come to meet them to talk about their uncle, James

1:22

Albert Covana, or Albert as

1:25

they knew him. He

1:27

was a family man, a proud

1:29

man that was always very smartly

1:31

dressed, but a character

1:33

and a jovial sort of guy.

1:37

Albert was married to Violet, a high-flying

1:39

nurse who he met in hospital

1:41

whilst recuperating from tuberculosis. I

1:45

can remember staying on a Friday night and

1:47

I can remember them both standing in front

1:49

of the fire hugging each other. And

1:52

you know, I can't even say that

1:54

I saw my mum and dad standing in front

1:57

of the fire and hugging each other like that

1:59

because they didn't. So yeah, they had

2:01

quite a loving relationship.

2:04

Always in a shirt and tie, Albert

2:06

liked the pine in the pub and had a

2:08

passion for cars, even nicknaming

2:11

one, Betsy. It was a bit

2:13

fancy. I thought it was rich. I thought

2:15

it was rich when he bought that. I'm

2:18

here to talk to them about Albert's time

2:20

working as a miner. He

2:22

came from a long line of them. His

2:24

father and grandfather both worked in

2:26

collieries. They all wore

2:28

clogs and they set off to

2:31

work with maybe six of them marching. By

2:33

the time they got halfway to collision with

2:35

the 60 people, it

2:38

was marching with clogs on really

2:40

loud. But

2:43

I can remember Albert still working at

2:45

the Pete. I can remember

2:47

him still being there. Was he proud

2:49

to be a miner? Did he like the

2:51

job? I

2:53

mean most people were proud

2:56

of the job them days.

2:59

When Albert died in 1977, his

3:02

occupation was listed as a time clock at the

3:04

pit, responsible for keeping

3:06

track of the men's hours and wages.

3:10

It's likely he'd been moved off the coal

3:12

face and into that job, due

3:14

to an illness which affected thousands

3:16

of coal miners across the country.

3:19

Is that something that you were ever aware of as kids?

3:22

No, really. No. I

3:24

can't ever remember. I

3:27

can't remember him being like ailerdine. No.

3:30

At all. And I don't think it

3:32

would be something they would have talked about anyway.

3:34

No. Albert was

3:36

getting a pension for a condition

3:38

called pneumoconiosis. Inhaling

3:40

dust day after day, year after

3:43

year, left miners suffering with

3:45

a lung condition. It's a

3:47

good job, I wish you should come down on the... You'd

3:50

get a lot better crack out of some of

3:52

the men down there. I'm going to talk for

3:54

you, although. Meet

3:58

Michael, David and Tom. From

4:01

as young as 15 they worked at one

4:03

of the biggest collaries in the area called

4:05

Haig. Now in their

4:07

70s and 80s they meet up regularly

4:09

with other X miners to chat about

4:12

old times. It's an experience

4:14

being down fit. No, there's

4:16

no industry like it I don't think. I

4:19

looked at this cage. You

4:22

could fit two people in side by side

4:24

but there was ten in line. So

4:27

now they visit you say it's 1200 feet

4:29

and then when the cage

4:31

went it didn't just gradually,

4:33

it fell at three, four speeds you know.

4:37

Everybody went quiet and nobody

4:39

spoke. Up until that

4:41

point they'd be talking about what they'd been doing

4:43

last night and things like that. And

4:45

nobody spoke all the way down and

4:48

couldn't reach to about 50 foot off the bottom.

4:52

If you hadn't had a lamp on you can't say

4:54

your hand in front of your face and

4:56

it's noisy and it's

4:58

dusty. You know

5:00

just get your oat slit. Although

5:03

they didn't know Albert they

5:05

remember miners suffering from

5:08

pneumoconiosis. Just to say I'm dusted

5:10

and it was really bad. They couldn't braid

5:13

you know and then they couldn't walk

5:15

because they couldn't braid. But

5:17

there wasn't much compensation about for them. Well you'd

5:19

see a man walking and be gone. Like

5:22

I couldn't breathe through his nose. The

5:24

more the dust you got the less lung capacity

5:27

it had. It wasn't really

5:29

talked about it was worried about it. I

5:31

think everybody thought I don't want

5:33

to catch that you know. But it was looked

5:36

on as just an occupational hazard. But

5:41

that occupational hazard became a big

5:44

problem for the then national coal

5:46

board. So it set up

5:48

its own medical services to monitor the miners

5:50

health. And then in the 1950s

5:54

it launched a groundbreaking research program

5:56

called the pneumoconiosis field research

5:58

study. 25

6:01

collaries across England, Scotland and Wales

6:03

were selected including Hague.

6:07

Anthony Seaton is a professor of

6:09

occupational and environmental medicine. It

6:12

was an extraordinarily ambitious thing. They

6:14

set out to study these people once

6:17

every five years. They'd

6:19

x-ray them, they'd get symptoms,

6:21

they'd do their lung function.

6:25

And crucially, they also measured the amount

6:27

of dust that they were being exposed

6:29

to in the mines

6:31

at that time. The

6:33

potential was to find out

6:36

how much dust you needed

6:38

to breathe in before you

6:40

got pneumoconiosis, find out

6:42

what it was in the dust

6:45

that caused pneumoconiosis, and

6:47

most importantly, as a result

6:50

of the research, guide the

6:52

industry to what levels of

6:54

dust would be allowable in

6:57

the coal mines. It

6:59

wasn't compulsory, I didn't have to go, but

7:01

most people went, they would x-ray you

7:04

and it would give you chubed to blow in for your lung

7:06

capacity. A lot of people thought it

7:08

was in their best interest, didn't they, you know, to go. Do

7:12

you remember ever being told

7:14

what the research was for or how it was going

7:17

to be used? No,

7:19

we assumed they were looking after us, you know, they

7:22

were trying to look after us. And

7:24

do you remember anyone ever asking

7:26

you to sign anything or get

7:28

any permission or consent to take

7:31

part in these things? No, I can't,

7:33

no. But in them days,

7:36

the medical people didn't really ask for permission

7:38

to do it, didn't they? No. David

7:43

might not realise it, but that

7:45

sentence sums up this entire investigation.

7:49

This is a story about coal mining,

7:51

the pursuit of science and consent, about

7:54

what workers and their relatives were

7:56

told when they got involved in research like

7:58

this. and whether

8:01

the potential benefits could ever

8:03

be seen to outweigh the need for

8:05

permission. You are really looking

8:07

for silent evidence. The hospital

8:09

worker has claimed it was normal practice to remove

8:12

the lungs from dead miners in the 1960s, 70s

8:14

and 80s. To

8:17

affair with your life, your body,

8:19

it shouldn't be done without

8:21

you knowing. I'm Emma Ford

8:23

and for Falom 4, this is the

8:26

Cold Town Mystery. Four

8:32

years ago I was doing some research

8:34

and found myself reading something called the

8:36

Redfern Inquiry. Published

8:38

over a decade ago, it investigated

8:40

how and why organs were removed

8:43

from the bodies of former nuclear

8:45

workers over a 30 year period.

8:48

I honestly can't remember why I stumbled upon

8:50

it, what drew me to it. Over

8:53

600 pages long, it

8:56

details how organs were removed

8:58

at post-mortem examinations without permission,

9:01

and led to the government at the time setting

9:03

up the inquiry. Mr Speaker, this is clearly

9:05

a difficult situation, even in events that took

9:07

place up to 45 years ago. Nonetheless,

9:10

we owe it to the families as well

9:13

as the general public to find out what

9:15

happened and why. As shocking as it was,

9:17

it was a tiny newspaper article

9:20

related to the inquiry which really

9:22

caught my attention. The

9:25

headline read, Mystery over Miners

9:27

Body Parts. It

9:29

suggested that the lungs of miners were

9:32

routinely removed during post-mortems for testing

9:35

and questioned what relatives knew. So

9:37

that's what I've been trying to get to the bottom of. Was

9:40

it true? But first,

9:43

I need to explain more about the Redfern

9:45

Inquiry, the starting point for all of this.

9:48

And who better to do that than

9:51

the man in charge of it? I

9:53

knew that it was a very serious matter

9:56

to investigate, and as things

9:58

unraveled, the big question was... whether

10:01

the family had any idea

10:03

as to what was going on. This

10:05

is Michael Redfern Casey. In

10:08

2007 he and his

10:10

team were tasked with investigating the extent

10:12

to which organs were removed and

10:14

tested for exposure to radiation. Although

10:18

some of the men worked at different nucleocytes,

10:20

the majority had worked at Sellafield in

10:22

Cumbria. When

10:24

a worker died, arrangements were in place

10:27

between pathologists at the local hospital, coroners

10:30

and Sellafield medical officers. Those

10:33

workers were identified for

10:35

post-mortem examination and

10:39

after that post-mortem, a doctor

10:41

would call and collect the specimens. What

10:44

were the specimens? What were we talking about here?

10:46

Well, that was the heart, the lungs, but

10:49

more particularly the long bones of

10:51

the body, the spine and the

10:53

femur. How many

10:56

men did you find that this was happening

10:58

to, that organs were being taken? There

11:01

were 75 to begin with, but

11:04

as our enquiries progressed we

11:06

found that there were other

11:08

bodies who were retaining organs

11:11

for research purposes and altogether

11:13

we identified 6500. Was

11:17

there moments that sort of stood out for you in

11:19

things that you found? I

11:21

found two invoices for 144 broom

11:25

handles on

11:27

each invoice and

11:29

I couldn't understand the purpose until it was

11:31

explained to me by a doctor that they

11:33

were used to replace the long

11:36

bones from the femur and the spine

11:38

so that the body was stiff and

11:40

ready for burial. Families

11:43

buried men with broom handles in

11:45

place of missing bones. In

11:48

most cases, several organs were removed,

11:51

lungs, the liver, the kidneys, the

11:53

spleen, ribs and vertebrae. Michael

11:57

Redfern spoke with many families who had

11:59

no idea. their relatives had had

12:01

organs removed. It was

12:03

probably articulated best by one family who said,

12:06

throughout our relatives' life, we

12:09

communicated with him through his brain

12:12

and his heart and

12:14

his lungs, and we buried him

12:16

without knowledge of the fact that none of

12:19

those means of our abilities to communicate were

12:22

there when we buried him, and it came as a very

12:24

deep shock to them. But

12:26

what about those newspaper articles and press

12:29

reports at the time of the inquiry?

12:32

The ones that suggested similar practices

12:34

were happening to miners. The

12:37

claim was made by a whistleblower who

12:39

works at West Cumberland Hospital in Whitehaven,

12:42

the same hospital at the centre of

12:44

the Sellafield scandal. A former

12:47

hospital worker has claimed it was normal practice to

12:49

remove the lungs from dead miners in the 1960s,

12:51

70s and 80s. As

12:54

a result, the National Union of Mine

12:57

Workers has backed calls for the Sellafield

12:59

body parts inquiry to be widened to

13:01

include miners. Did you ever

13:03

look into whether this was going

13:05

on in other industries, particularly the mining industry?

13:08

No, I merely saw that there was opportunity

13:10

for it to happen elsewhere. With

13:13

the Sellafield scandal, many of the

13:15

families said, had they been asked if

13:17

organs could be used to help with research,

13:20

they probably would have agreed. But

13:22

it was the not knowing which left them

13:24

angry. During

13:27

the Redfern inquiry, key evidence

13:29

was found in the Post-Maltim and Coroner's

13:31

reports of the men who died. Could

13:34

I find the same again? You

13:36

are really looking for silent evidence.

13:39

You need to look for miners

13:41

who died and

13:43

also look at the Coronial archive

13:45

for a particular area and

13:48

you may find what we found. And

13:50

who do you think would be best place

13:53

to help me uncover those records?

13:56

The archivist in Cumbria

13:58

was... diligent,

14:00

helpful and keen

14:03

to assist wherever possible and I

14:05

would certainly recommend him. That

14:09

helpful archivist was a man called

14:11

Robert Baxter and luckily for me

14:14

he still works there. Can you

14:16

hear me okay? Hi Robert, yeah I can hear

14:18

you. How are you? Yeah, yeah

14:20

I'm fine thanks. Was

14:22

it quite a daunting task to be given?

14:24

It was a daunting task, it was a

14:26

lot of work for them and for us.

14:29

Robert agrees to help me with my search

14:31

for any records or paperwork. The

14:34

local coroner allows him to access old

14:36

coronal reports on my behalf but

14:39

where do we even begin? Hundreds

14:41

of men work at Haig Colliery

14:43

alone. I

14:47

spend days at the local archives in

14:49

Whitehaven, trawling through parish

14:51

records and eventually pull a

14:54

list of potential names together and send

14:56

them on to Robert. Let

14:59

me know how you get on and shall

15:02

we talk again when you've got any updates for

15:04

me? Yes let's do that. Finding

15:07

people who were working at West Cumberland

15:10

Hospital over 40 years ago is

15:12

understandably proving tough but

15:15

I did manage to find one person

15:18

who was mentioned in the original inquiry

15:20

and he agreed to talk to me. His

15:23

name's Terry and he worked at the hospital

15:25

mortuary. He remembers lungs

15:28

being removed and stored in the back

15:30

room. He suggested an

15:32

old colleague, Chris, might know more so

15:35

I set about trying to find him and

15:38

then one day while sat on my desk a

15:40

message pops up. It's

15:42

Chris. He says he almost

15:44

didn't reply but Thor had mentioned

15:47

Terry, a good guy from a

15:49

long time ago, he writes. Thanks

15:52

very much for getting back to me and

15:54

replying to my message first of all. You

15:56

intrigued me Hearing somebody from the

15:58

UK What? You. It all from the

16:01

B B C. I thought it was about

16:03

Er nurses strike thirty five years ago. This.

16:06

Is Chris Sabin. Now. In

16:08

his sixties he lives in Canada. He

16:11

missed the Uk Nineteen Eighty team with his

16:13

then pretty skill since. They. Moved

16:15

in with their parents and why haven and

16:17

got married. Not. Long after

16:19

he got a job as a pulsar. And

16:22

then got shifts at the mortuary. It.

16:24

Was a minor All. Door Cody

16:26

also sir block long as had snow on

16:28

we take the long so. I

16:30

we set of up in a preservative. And.

16:33

Every three or four months or panel from

16:36

the national call board is. What I

16:38

was told we're com and do

16:40

their bisecting. There was always

16:42

a panel of three. And I

16:44

get along so form of they were all able

16:46

to. They were. Are they? put him

16:48

on the cutting board? With

16:50

oh. Like a bread knife and a look like

16:53

they were displaced and bread. You know,

16:55

getting down, The different sections

16:57

of alongside. They would look at him

16:59

and discuss it. right? The

17:01

report. Or when they were all done

17:03

with everything they say thank you. I.

17:05

Will clean up and they will go home. Where.

17:08

You told anything about why this has been

17:10

done. I was led to believe that was

17:12

for pensions for the families. And

17:14

on I assume of family gotta a

17:16

bumper payment. A want

17:18

to sit on find out more about the

17:21

panels and their work. That.

17:23

I'll have to wait though as I get a

17:25

call from Robert the Archivist in Cumbria. It's

17:28

a mixed bag. In a

17:30

couple of cases, we have

17:32

got evidence that the lungs

17:34

were preserved. For instance, In

17:37

this case from Ninety Six,

17:39

the before just says that

17:41

the long show some numeral

17:43

conejos his retained for matrix

17:46

emanation by the new Conejos

17:48

his panel and it doesn't.

17:50

Say anywhere in those files eve look

17:52

through anything about lungs been and send

17:55

on anywhere else further. This. Is.

17:58

What's. missing at the moment of this simply

18:00

isn't any other

18:02

paper trail to show what happened

18:04

to these specimens after they'd been

18:07

examined by the new malconiosis panel. Are

18:10

these panels the same ones Chris Fairburn

18:12

remembers from his time at the mortuary?

18:14

I need to try

18:16

and find someone who works for one of these panels

18:18

Chris remembers. The question is,

18:21

is anyone still around? Luckily

18:24

after weeks of searching, I

18:26

think I've found someone. How's

18:30

the north east today? Great

18:32

and wet but we're spared the strong

18:35

winds at the moment. This

18:38

is Bruce. In 1975 he applied for a

18:40

job with the then Department of Health and

18:43

Social Security or DHSS.

18:46

At 18 years old he was given a role

18:48

as a clerical assistant to the Newcastle pneumoconiosis

18:51

medical panel. He

18:53

explained more about the panels, known as

18:56

PMPs and their function.

18:58

It was to accept

19:00

and process claims from

19:02

minors suffering from minors

19:04

lung disease pneumoconiosis. Everybody

19:09

was given a medical to assess

19:11

the damage to the lungs. They

19:13

would have blood pressure checks, lung

19:16

function tests, this kind of thing

19:18

done and a determination

19:21

was reached on

19:23

the basis of their lung

19:25

damage. There were nine

19:27

panels across Britain made up of

19:30

specialist doctors, clerical assistants like Bruce

19:32

and other medical staff and were

19:34

overseen by the DHSS. Remember

19:37

Sandra and June's uncle Albert? He

19:39

was assessed by one and awarded

19:42

a pneumoconiosis pension. But

19:44

as well as assessing minors like Albert

19:46

in life, the panels also

19:49

had another role. When

19:51

a minor died and it was suspected

19:53

they had pneumoconiosis, Local coroners

19:55

in England and Wales were required to

19:57

inform them when aware of the disease.

20:00

Post mortem would be taking place

20:02

then. as requested by governments, organs

20:04

such as the lungs and heart

20:06

would be made available to the

20:09

panels for further analysis. To.

20:11

Determine the extent of the disease and

20:13

if a death benefit was payable. It

20:16

would come in. Via with Korea

20:18

in a sealed that policy

20:20

embark he obviously heart and

20:22

lungs together up quite a

20:24

heavy part of the human

20:26

body. The with parked

20:29

in large leather what we called

20:31

hot boxes that look circular with

20:33

a with a lid on the

20:35

top of that was struck down.

20:37

And they were then sent on state

20:40

or that for the hospitals. Research

20:43

departments, A and all

20:45

the default with health. Seeing. Them

20:47

from one side to the office to the other

20:49

was the sum total of our revolver. On the

20:51

clerical side. Up to this point

20:54

the work of the panels with us expect

20:56

said assessing man and looking for evidence of

20:58

illness. But. Where was some

21:00

of as lungs and heart going on?

21:03

Some work was done, It's

21:09

initial came in London.

21:13

And two days making my way

21:15

through pages upon pages of old

21:17

documents a papers were yellows and

21:20

have access to smile about them

21:22

somewhere hand written and hard to

21:24

read, other something closer public see

21:26

years only available to look out

21:28

for the first time in the

21:31

last decade. I

21:33

started to think I wouldn't find anything. Until

21:35

I came across one file. A

21:39

can record in the archives sub to step

21:42

outside to try and explain what I've found.

21:44

So this file had a bunch of government

21:46

pays has from the then Department of Health

21:48

and Social Security and they would dated from

21:51

the nineteen. Sixties and seventies. And

21:54

there were various less is from

21:56

government lawyers and doctors discussing the

21:58

impacts has something called the Human

22:00

The Issue at Nineteen Sixty one

22:02

on the panels. I'll

22:04

tell you a bit more about the at

22:06

least from but basically it Burleson rules around

22:08

the use of organs. But there was

22:11

one less her which says and

22:13

I quote asked to death the

22:15

Pnp send organs when their interest

22:17

in them as ended to the

22:20

Institute of Occupational Medicine in Edinburgh.

22:23

The Institute of Occupational Medicine was

22:26

set up by the Zen National

22:28

Cobalt to study lung diseases and

22:30

minus. I started looking

22:32

around for studies carried out by it. And

22:35

then I found one which caught my attention. It's

22:39

he says how in nineteen seventy bomb

22:41

it was decided to obtain the lungs

22:43

have as many men as possible. He

22:45

taken part in the new Mccain yes

22:47

his field research study. Remember

22:49

that was the big research program

22:51

monitoring the health of fifty thousand

22:54

minus across dozens of calories. And

22:57

the late nineteen seventies, Professor

22:59

Anthony Season was appointed director.

23:01

Of the Institute's. This.

23:04

Was critically important part

23:06

of the research because

23:09

all these patients. All

23:11

of them were people

23:13

who had voluntary come

23:15

along to our studies

23:17

so we knew. What?

23:20

They have been in life. what

23:22

the what symptom said had we

23:24

knew of their lung function had

23:26

been and crucially we knew how

23:28

much dust that been exposed to

23:30

in their lives and what we

23:32

wanted to do is show how

23:34

much of that dust was left

23:36

in their lungs and whether that

23:38

related to the risk of them

23:40

having emphysema which is something you

23:42

can only see when he looked

23:44

at along and some to the

23:46

microscope. During the.

23:48

Mid nineteenth Seven Seas dance to collected

23:51

five hundred set of lungs from coal

23:53

mine as. Had worked across

23:55

those calories. In the

23:58

majority of cases, The heart was. also

24:00

made available and stored for later

24:02

examination. Most

24:04

of the organs were supplied

24:06

by the pneumoconiosis medical panels.

24:09

Almost all our lungs came through

24:11

the panels and almost all were

24:13

a consequence of an order by

24:15

the coroner to have a post

24:18

mortem. I've been trying

24:20

to get my head around where the law

24:22

and people's understanding of it stood at this

24:24

time. Earlier, I

24:26

mentioned something called the Human Tissue Act

24:28

which came into force in 1961 and

24:31

brought in laws around how organs could be

24:33

used. I'm

24:36

not a legal expert. So I called

24:38

on someone who is. So once

24:40

the Human Tissue Act 1961 was in force

24:42

at the point of removal, we

24:44

needed to check what the

24:47

deceased person wanted to happen. So the

24:49

permission that they gave, they could donate

24:51

their body for research, but in circumstances

24:53

where we don't know what the dead

24:55

person would have wanted, somebody

24:57

has to check that it's an appropriate

25:00

thing to donate for the

25:02

purposes of science. If the

25:04

family was available, the 1961 Act

25:06

requires them to say that they don't have

25:09

checked to being used for medical or

25:11

research purposes. This is Sir

25:13

Jonathan Montgomery, Professor of Healthcare

25:15

Law at University College, London.

25:18

We had rules that govern the

25:20

taking of samples, but

25:22

we didn't have anything clear about keeping them.

25:25

The problem arises when we begin to

25:27

think about potential additional uses that we

25:29

didn't think about at the time, and

25:32

therefore neither the person who died nor

25:34

the family was asked about. As

25:37

part of their normal duties, the

25:39

panels were allowed to examine organs. But

25:42

what about passing them on to others? I

25:45

asked Professor Seaton for his understanding

25:47

about how consent from minors or

25:50

their relatives was being gathered. I

25:53

can't say in individual cases,

25:55

of course, but

25:57

consent from the relatives was given.

26:00

to allow a post-mortem

26:02

examination which would

26:04

in those days implied removal

26:06

of organs for examination and

26:08

then if no disapproval had

26:10

been announced their

26:14

use in teaching and research. So

26:16

there was an overall belief at the

26:18

time that organs removed at

26:21

autopsy with proper permission

26:23

could be used. And

26:26

that it was all agreed with the

26:28

trade union and the NUM at the

26:30

time was very keen for

26:34

miners who died to have

26:37

post-mortems because the post-mortem would

26:39

help the union's efforts to

26:42

get proper compensation for the

26:44

widow. Do you think

26:46

that further steps should have been taken

26:48

rather than just a perception at that

26:51

time that if a relative gave

26:53

consent for a post-mortem that

26:55

gave somebody the freedom to use those

26:57

organs for how they wanted to? I

27:00

don't think it would have been done

27:02

at that time. You didn't say

27:05

we're going to take a lung

27:07

out, take it to the

27:09

laboratory, pickle it in formaldehyde

27:11

or whatever and slice it up

27:14

and examine it under a microscope.

27:16

You didn't say that but to

27:18

us it was implicit at the

27:20

time. I'm just talking about what

27:22

was the general practice at that

27:24

time. But should

27:26

it have been explicit to the families that

27:28

organs were going to be passed on for

27:30

research? You can understand

27:33

not wanting to go back to relatives after

27:35

someone had passed away and risk upsetting them.

27:38

But names and details of suitable men

27:40

were being sent to the panels so

27:43

when they died they could be identified

27:45

and their organs sent on. Professor, Sir

27:48

Jonathan Montgomery again. When

27:50

they decided in 1971 that they wanted

27:52

to attain lungs from people in their

27:54

study there would have been three categories.

27:57

There would have been people who had

27:59

died. long before, and

28:02

if there were any samples left, they would

28:04

be held in pathology departments. For

28:06

that group of people, I don't think

28:08

there's any clear legal framework. A

28:11

second group would be people who had

28:14

recently died, and

28:16

they were about to perform

28:18

post-mortems. And in those

28:20

circumstances, the Human Tissue Act would apply.

28:22

You would expect to check with the

28:25

family whether they had any objection to

28:27

the lungs being used for research. And

28:30

then there would be a third category of people who

28:32

were known to be unwell and in the study being

28:34

followed through. And those people should

28:36

have been asked whether or not,

28:38

when they died, they wanted their organs to

28:41

be donated to the study. So

28:45

did that happen? Remember

28:47

that government file in the archives, the one

28:49

discussing the acts and the impacts on the

28:52

panels? Well, in those same

28:54

letters, doubts were being raised.

28:57

The words are read by an actor. The

28:59

project has the agreement of the NUM

29:02

and no doubt the Institute obtained the

29:04

men's agreement to cooperation, but I doubt

29:06

whether this would cover the death follow-up.

29:10

If we wanted assurance on this, we

29:12

could ask the Institute to contact the

29:14

men and tell us of those who

29:16

gave their permission and only pass on

29:18

those organs. So

29:20

what assurances were sought and is

29:22

there any record? I

29:25

asked the Institute directly, but it told me

29:27

it was unable to comment as it didn't

29:29

have the information available due to records being

29:31

destroyed after 15 years. Documents

29:35

revealed the Institute also approached the

29:37

National Union of Mine Workers for

29:39

help in obtaining lungs and it

29:42

agreed. The NUM told

29:44

me it couldn't find any specific reference

29:46

to indicate that the Union was aware

29:49

of or endorse the sharing of organs

29:51

for research from coal miners. What

29:55

is evident though within the government papers

29:57

is alarm bells were ringing about

29:59

what the panels were doing with the organs

30:01

and how that sat within the law at the

30:04

time. Again we've had the

30:06

words voiced up. There is a

30:08

suggestion that the organs might be

30:10

disposed of by passing them on

30:12

to the Institute of Occupational Medicine

30:14

for research purposes. This

30:16

would be a clear breach of the provisions

30:18

of the Human Tissue Act 1961 unless

30:21

authorization under and accordance with the

30:23

provisions of that act was first

30:25

obtained. I agree

30:27

that the passing on for research of

30:29

such organs is outside the competence of

30:32

the PMPs and we are

30:34

advising that this should not be done

30:36

without proper authority in writing. We

30:39

were completely unaware of any

30:42

objections to us having

30:44

the lungs. They had to go

30:47

to the pneumoconiosis panels and

30:49

of course the other panels would just

30:51

have them incinerated after examining

30:54

them so it didn't

30:56

seem unreasonable to

30:59

use these lungs for the

31:01

purposes we use them for for the benefit

31:03

of minors. But what they were flagging

31:06

was that the passing on of

31:08

organs for research purposes by

31:10

the panels would have been

31:12

a clear breach of the Human Tissue

31:15

Act the law at that time unless

31:18

checks had been made

31:20

to see if relatives objected or if

31:23

someone had given permission before

31:25

they died. There were no concerns

31:27

expressed at the time at all. Yes because

31:29

I remember the research was all on oh

31:31

but there are no buts and if no

31:34

one mentioned any possible objection

31:36

to the use of lungs

31:38

for these purposes. There were

31:40

certainly concerns about the way

31:42

the panels were operating at

31:45

the time. You say so

31:47

and maybe you've seen some evidence

31:49

of this. Yes I've seen documents

31:52

in the National Archives. Different government

31:54

departments often seem to operate to

31:56

different policies but I say

31:59

as the person who who ultimately was

32:01

responsible for this research. I never

32:03

had any crimes of conscience about

32:05

it at all. It was all

32:08

done for a very good, honest

32:10

and ethical purpose. I

32:12

asked the government for its record of

32:15

these historic practices, but it

32:17

didn't provide a response. There's

32:19

always a possibility that the panels got consent

32:21

when they were examining men in life, but

32:24

the only mention I've managed to find was

32:27

buried in the panel's office handbook.

32:30

It says that when men came in

32:32

for an examination, they were invited

32:34

to sign a consent form, which stated

32:36

the following. I consent

32:38

to the pneumoconiosis medical panel advising

32:41

the Institute of Occupational Medicine of

32:43

the result of my examination. But

32:46

that's it. No mention of organs.

32:50

One way to be sure about what consent

32:52

was gathered would be to identify the

32:54

men whose lungs and hearts were used, but

32:57

no one seems to have a record of them. And

33:00

after months of looking, I

33:02

couldn't find any trace either. I

33:04

even asked six hospital trusts, including

33:06

Wes Cumberland, who had also provided

33:09

lungs for the study, but

33:11

most of them said they didn't have records going

33:13

back that far. The

33:18

thought I've kept going back to is

33:20

around the scientific benefits these studies brought.

33:23

These were research projects to help

33:25

understand diseases and improve conditions

33:27

for workers. As

33:29

Professor Seeson explains, they

33:31

helped establish definitive links with dust

33:34

and other lung conditions. It

33:37

made a huge difference, of course,

33:39

because minors did not get compensation

33:41

for having COPD, or

33:44

it was very difficult to get compensation

33:46

for that until we had

33:48

done our research and shown that there

33:51

was this relationship. This was

33:53

work that was being done for a

33:55

wholly beneficial process in the

33:57

pursuit of knowledge for the benefit of

33:59

the... of a working

34:01

population, for the benefit

34:03

of mine workers. Mine

34:06

workers like Albert Cavana, the

34:09

man who loved cars and his family.

34:12

Post-Morton records uncovered by archivist

34:14

Robert Baxter show that

34:16

his lungs and heart were retained for

34:19

a pneumoconiosis panel, but

34:21

we found no evidence that they were

34:23

then passed on for research purposes. A

34:27

relief to his nieces, Sandra and

34:29

June. What right did they have

34:31

to pass them on to somebody else? And

34:34

I understand years ago, these

34:37

panels and these doctors, they

34:39

thought it was their right to

34:42

do what they did. And

34:44

maybe we've moved on a little bit

34:46

from that time as well, but

34:49

we're all human beings, aren't we? And surely

34:51

we own our own bodies and we should

34:53

be- You should have just

34:56

said- Yeah, yeah. When they took them in the

34:58

first place, they probably knew what they were going

35:00

to do. So they should have asked the question

35:02

in the very beginning. Scandals

35:04

like the one in Sellafield and others

35:06

before it resulted in a massive overhaul

35:08

of the laws around organs and

35:10

consent with the rigorous regulatory

35:12

system now in place. Analysis

35:15

of organs and human tissue can

35:18

bring huge benefits to the understanding

35:20

of disease and serious illnesses. But

35:23

as Michael Redfern highlights, the

35:26

importance of transparency can't

35:28

be underestimated. You

35:30

have had the opportunity of seeing the

35:32

post-mortem reports and

35:34

I think it would be fair to

35:37

say you were surprised at the extent

35:39

of the retention of the main organs

35:41

of the body and the lack of

35:43

accountability or audit or what happened to

35:45

those organs. The reasonable expectation was

35:47

that the organs would be returned to

35:49

the body and those that weren't, it

35:51

should have been explained to the next

35:54

of kin what was happening

35:56

to them and why. The

35:58

deception was that they didn't want to- to

36:00

do anything that might

36:02

make things worse, accentuate the

36:04

grief, and therefore they thought

36:07

the less they said the better it would

36:09

be, but in fact that was quite contrary

36:11

to what their duty

36:13

was, which was to give full

36:15

information to the next of kin

36:18

about what the organs might be used for.

36:24

At the end of November I head back

36:27

up to Whitehaven in Cumbria. It's

36:29

minus three when I arrive, the winter

36:32

sun shining over the harbour. I

36:35

meet up again with ex-miners David,

36:37

Michael and Tom. I

36:40

could have done wider with all this

36:42

research but it didn't filter out a

36:44

lot. It was, no, it was

36:46

hell to know. We were always

36:48

kept in dark one way. I

36:52

can't say why they'd agree with you for

36:54

a start-off. If the rushers

36:57

parts of central Ireland country, they

36:59

don't say we've had a post-mortem and we took

37:01

his lungs and his liver out and we're giving

37:03

them to somebody else to look at. Do

37:05

you think that should have happened or should have been more

37:07

informed choice? It's been too old I feel going

37:09

to do it. Especially if they

37:11

didn't put the organs back. How

37:14

many people knew these organs were going

37:16

off elsewhere? Once you were dead you

37:18

were just an object to them. Take

37:20

bits and parts through here and have

37:22

a look at them and then just

37:24

dispose of them. These

37:27

hard-working people deserve more respect

37:29

than that. This

37:35

File on Four podcast was presented

37:38

and produced by Emma Ford. The

37:40

technical producer was Richard Hanniford and

37:42

the production coordinator was Tim Fernley.

37:44

The editor was Claire Fordham. This

37:47

was a BBC long-form audio production

37:49

for BBC Sounds where you can

37:51

find more radio music and podcasts.