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| This
chapter
reports
on
the
results
of
the
questionnaire
sent
to
NHS
Trusts
that
were
not
visited
during
this
Investigation
but
which
at
the
time
of
the
Chief
Medical
Officer's
Census
in
2000
held
substantial
numbers
of
brains
retained
from
Coroners'
cases.
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|
Background
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| A
review
of
the
Census
returns
showed
there
were
17
Trusts
in
England
that
reported
holding
substantial
numbers
of
brains
from
Coroners'
cases.
These
Trusts
were
asked
to
provide
details
of
the
arrangements
that
had
been
in
place
when
brains
from
Coroners'
cases
had
been
retained,
and
in
particular
the
consent
procedures.
Most
of
the
collections
were
held
in
pathology
departments
but
some
collections
were
in
other
hospital
departments.
Some
Trusts
referred
to
the
collections
as
research
or
teaching
'archives'.
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|
Questionnaire
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| The
questionnaire
at
Annex
105
was
sent
to
the
17
Trusts
with
collections
of
more
than
50
brains
from
Coroners'
cases.
Trusts
were
asked
if
brains
of
Coroners'
cases
had
been
retained
solely
for
research
or
for
teaching
and
if
any
brains
had
been
collected
specifically
to
serve
as
'controls'
for
research
studies.
Other
questions
concerned
the
use
in
research
of
brains
initially
referred
for
diagnosis.
Further
questions
explored
the
arrangements
for
any
consents
given
by
Coroners
or
relatives.
|
Annex
105 |
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|
|
| A
modified
questionnaire
was
sent
to
Trusts
that
reported
holding
more
than
100
brains
in
an
archive,
as
all
the
archives
contained
brains
from
both
Coroners'
and
hospital
post
mortems.
The
replies
from
archives
were
collated
and
analysed
separately
from
the
collections.
|
Annex
106 |
|
|
| It
should
be
noted
that
the
Trusts
responded
on
the
basis
that
the
data
provided
would
be
collated
with
no
Trust
individually
identifiable.
Every
Trust
completed
the
questionnaire.
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| Number
of
Trusts
and
brains
held
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| In
all
there
were
17
collections
and
nine
archives
held
in
25
hospitals,
with
a
total
of
23,190
retained
brains.
Over
a
20-year
period,
the
collections
had
retained
14,670
brains,
all
reportedly
from
Coroners'
cases.
In
the
nine
archive
collections
there
were
8,520
brains
but
the
number
of
these
from
Coroners'
cases
is
unknown.
|
|
|
|
| Trusts
were
specifically
not
asked
to
report
on
the
collections
of
brains
from
hospital
post
mortems
that
had
been
separately
reported
to
the
Chief
Medical
Officer's
Census.
Trusts
that
only
held
brains
from
hospital
post
mortems
were
not
sent
the
questionnaire.
It
is
clear
that
brains
from
hospital
post
mortems
had
not
been
included
in
the
responses
received.
|
|
| The
largest
of
the
17
collections
held
over
4,000
brains
from
Coroners'
cases,
while
the
two
smallest
collections
held
more
than
70
brains
each.
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| The
largest
archive
holds
over
3,000
brains
and
the
smallest
in
this
survey
125
brains.
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| Responses
to
questionnaire
on
17
collections
and
nine
archives
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| Introduction |
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| All
17
collections
responded
to
questions
1
to
3,
but
only
14
needed
to
respond
to
questions
4
to
7.
No
brains
from
the
remaining
three
collections
had
been
used
for
research
or
teaching.
The
nine
archives
were
expected
to
answer
all
the
questions.
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| Results |
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Were
any
brains
from
the
Coroner's
autopsies
retained
solely
for
research
and/or
teaching
purposes?
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Features
of
the
replies
|
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| Six
collections
and
three
archives
include
some
brains
collected
solely
for
research.
These
collections
have
similarities
of
purpose
to
the
joint
collection
in
Manchester
and
the
Cambridge
brain
bank.
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| Only
three
collections
and
three
archives
collected
brains
of
Coroners'
cases
as
controls.
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| Of
the
26
collections
and
archives,
all
but
three
had
been
used
for
research
and/or
teaching. |
|
| No
explanation
was
offered
about
why
brains
had
been
retained
in
the
three
collections
which
had
not
been
used
either
for
research
or
teaching.
As
each
of
these
collections
reported
holding
more
than
100
brains,
the
purpose
for
which
they
were
retained
is
unclear.
|
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|
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| Six
collections
and
three
archives
reported
that
the
Coroner
was
aware
of
retention,
and
had
given
oral
approval.
In
these
collections
it
was
reported
that
consent
from
relatives
was
mostly
'never
sought'
before
1990.
Consent
from
relatives
became
routine
in
only
two
collections
during
the
last
decade.
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| Written
consent
from
Coroners
was
noticeably
not
reported
until
the
late
1990s.
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| The
majority
of
brains
in
these
collections,
accounting
for
some
80
per
cent
in
total,
were
originally
retained
after
the
diagnostic
process
had
been
completed.
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Archive
collections
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| Trusts
that
had
archive
collections
reported
that
brains
from
Coroners'
post
mortems
had
been
retained
specifically
for
teaching
or
research.
Almost
80
per
cent
of
the
sample
had
originally
obtained
the
collection
of
Coroners'
brains
for
diagnostic
purposes
but
later
used
it
for
teaching
or
research.
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|
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| Almost
all
collections
reported
they
had
never
asked
relatives
for
consent
to
brain
retention
in
their
archives.
In
only
one
case
was
it
reported
that
relatives'
consent
had
been
sought
'sometimes
until
1993
and
then
routinely'.
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| Summary |
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| Of
the
brains
held
in
pathology
departments,
the
great
majority
are
accumulations
of
brains
not
disposed
of
after
the
completion
of
the
diagnostic
process.
Some
of
these
were
later
used
for
teaching
or
research.
Less
than
half
of
the
sample
reported
that
Coroners
were
aware
of
the
arrangements.
Where
Coroners
had
given
consent,
this
was
only
on
an
oral
basis.
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| These
results
demonstrate
that
the
practice
of
retaining
brains
from
Coroners'
cases
for
research
and
teaching
was
well-established
between
1980
and
2000.
In
this
manner,
over
21,000
brains
had
been
collected.
|
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| The
consent
of
relatives
was
almost
never
sought.
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|
