How should human tissue be treated?

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How should human tissue be treated?
In 1999 a total of 2,080

How should                                                  children’s hearts and more
                                                            than 800 organs from
                                                            children were kept at
human tissue                                                Alder Hey Hospital along
                                                            with 400 foetuses

be treated?                                                 collected from hospitals(s)
                                                            across the region.

http://news.bbc.co.uk/1/hi/health/1136723.stm on 17.09.08
How should human tissue be treated?
Pathologist                Mother                         Public                      Legislative

“Consent wasn’t an issue   “It didn’t seem right that     “If someone had asked       “Doctors removing
with the 1961 Human        a heart belonging to my        me, I would have            organs without consent
Tissue Act. Nowadays,      child could be part of a       consented, but without      will face sentences of up
people rightly expect      collection like butterflies,   asking me, it’s just like   to three years in prison
control over what          or insects, something to       stealing.”                  and unlimited fines. A
happens to their body.     be visited and looked at.”                                 new Human Tissue
The whole pathology                                                                   Authority will license and
profession has embraced                                                               inspect premises and
change since the 2004                                                                 enforce a code of
Human Tissue Act.”                                                                    conduct.”
How should human tissue be treated?
Research using human

Whould                                                          tissue is essential if we are to
                                                                improve our understanding
                                                                of cancer and develop more
consent be so                                                   effective cancer treatments.

important?

Professor Alex Markham, Former Chief Executive of Cancer Research UK.
http://www.hta.gov.uk/newsroom/quotes_and_endorsements.cfm on 17.09.08
How should human tissue be treated?
The Times
Public                    Pathologists                Health Editor           Cancer Research

“I’d rather donate my     “Changing working           “The fear is that       “The 2004 HTA could
organs to save the        practices to address        obtaining consent       raise serious problems
lives of other people,    the issue of consent        will be laborious, to   for medical research.
than donate to medical    does mean more              the point where some    Had it been in place
research, it’s too        paperwork, but it’s a       studies become          earlier the research
complicated and I don’t   question of balance.        impossible.”            leading to the discovery
really understand what    Consent issues are                                  of the ‘cancer genes’
they do.”                 important to patients                               would not have been
                          and their families, so as                           possible, yet now
                          pathologists, they are                              people can have life
                          important to us.”                                   saving tests for these
                                                                              breast cancer genes.”
How should human tissue be treated?
A patient can state their

What do you                                                                wishes about what happens
                                                                           to their body after death.
                                                                           From September 1st, 2006,
think about                                                                the wishes of the deceased
                                                                           legally take precedence over

donation?                                                                  those of the family.

Musson R. and Burnapp L. 2006. British Journal of Nursing. 15 (15): 804.
How should human tissue be treated?
Law in England
Public poll                Public                        Patient                     from May 2020

“One in six people said    “In principle I’m against     “The living donor sharing   “You can choose to ‘opt
they would be certain to   the idea of paying            scheme brings hope to       out’ of organ donation
donate their body, organ   someone for their             me and others who are       after death by registering
or tissues for medical     organs, but if it meant       in such desperate need      online. Otherwise it will
research, education or     saving my daughter’s          of having a new kidney.     be assumed you have
transplant purposes.”      life, I wouldn’t hesitate.”   This and the possibility    ‘opted in’ for organ
                                                         of altruistic stranger      donation. Your family will
                                                         donation should help to     be involved in the final
                                                         address the shortage of     decision, so it is
                                                         organs available.”          important to tell them
                                                                                     what you wish to happen.
                                                                                     Your faith beliefs will
                                                                                     always be respected.”
How should human tissue be treated?
Without a post-mortem, it is

Wouldn’t your                                                        estimated that the cause of
                                                                     death can be wrong in up to
                                                                     30% of cases.
family want
to know how
you died?

http://www.nhs.uk/Conditions/Post-mortem/Pages/Why-is-it-necessary.aspx?url=Pages/What-is-it.aspx on 17.09.08
How should human tissue be treated?
Paediatric
Pathologist                  BBC News                    pathologist                Public

“past practices (keeping     “In 1999, in Liverpool,     “In my experience          “I don’t want to be cut up
patients organs after        Annette Grimes found        grieving parents are       when I die, because you
post mortem) were not        that the baby she           helped by allowing post    just don’t know what’ll
necessarily unlawful, but    thought she’d buried        mortems for their babies   happen to your bits and
they were increasingly at    whole, 40 years earlier,    and are greatly            pieces.”
odds with the                was buried without his      comforted by knowing
expectations and wishes      heart, lungs and            the post mortem
of many grieving             oesophagus, which had       research will help other
families, a practice which   been kept by the hospital   families with sick
is no longer acceptable.     following post mortem.”     children.”
Consent is now required
for post mortem and
tissue retention.”
Two British hospitals revealed
What should you                                             they had given heart tissue,
                                                            removed from children
be given in return                                          during live operations, to a
                                                            pharmaceutical company for
for donating your                                           research.

tissue?                                                     Shortly after, both hospitals
                                                            received cash donations from
                                                            the company involved.

http://news.bbc.co.uk/1/hi/health/1136723.stm on 17.09.08
Researcher                   Pathologist                    Legal expert*                          Member of
                                                                                                    the public

“Treatment of disease is      “For tissue used in            “Donation means gift,                  “I think donating tissue
constantly improving,         transplantation collected      and a gift is given                    should be for altruistic
and many of the               in the mortuary, if it can     without expectation of                 reasons like helping
developments are based        be used to help others         reward, whether of                     research on new
on the findings from          and it’s not costing           money or money's                       treatments, and not be
research on human             bereaved anything, so          worth. However, the                    about personal financial
tissue. Thus each patient     why should they be paid?       potential donor is                     gain for you or for your
benefits from those           For research, pathologists     entitled to make their                 family.”
patients who donated          cannot store tissue for        own decision about
tissue in the past. I think   very long; blood is            whether to donate, and
patients should have a        usually destroyed in less      to sufficient information
guarantee that all            than a week, solid tissue      to help them make that
research will be ethical      in a month. So, if it can be   decision. They are
and lawful and should         used to help others            entitled to know that
be able to find out what      where’s the harm in            their tissue will be used
research their tissue was     giving it away and it's not    properly and only for the
used for and what it          costing the bereaved           purposes for which they
discovered. BUT I think       anything, why should           are donating.”
payment for each              they be paid?”
                                                             *Lawyer point of view provided by Dr
sample would hamper                                          Ruth Stirton, Senior Lecturer in
the ongoing progress of                                      Healthcare Law, University of Sussex

research, and so should
not be offered.”
The family play a key role in

Whose                                                                  the donation process. The
                                                                       role of the family should be
                                                                       to help establish the decision
consent                                                                of the individual with regard
                                                                       to donation.

counts?

Source: Human Tissue Authority Code F: Donation of organs and tissue for transplantation 2020.
Patient rights activist     British Medical           Pathologist              Legislative
                            Association

“If someone breaks into     “The BMA would prefer a   “To remove tissue…        “To be able to give
your house and takes        system where upon their   without the agreement     consent for his or her
your belongings, it is      death, patients consent   of the patient would      own tissue, a patient
called stealing. But if     to organ donation is      be an assault on the      must be 16 years of age
someone takes tissues       assumed unless specific   individual and be         or above. Under the age
from your body, it is       objections have been      punishable under other    of 16 a patients parent
called medical research.”   made.”                    criminal legislation.”    or other legal guardian
                                                                                can give or withhold
                                                                                consent.”
Human tissue is ‘material,

What does                                                                 other than gametes, which
                                                                          consists of or includes human
                                                                          cells’. This Act does not apply to
‘human tissue’                                                            ‘hair and nail from the body of
                                                                          a living person’. HTA 2004

mean?                                                                     However, […] the legislation
                                                                          makes no distinction between
                                                                          the heart from a dead child and
                                                                          the urine from a living
                                                                          individual.

J.C.E. Underwood. 2006. The impact on histopathology practice of new
human tissue legislation in the UK. Histopathology. 49: 221-228. p.222.
Public Poll                Public                  Pathologist               Mother

“responses to the          “I’m happy to donate    “organs such as the       “It didn’t seem right
question “when I say       everything in my body   heart and the brain       that a heart belonging
‘human tissue’, what       to medical science,     evoke stronger feelings   to my child could be
springs to mind? Are:      except my brain.”       than do parathyroid       part of a collection like
bones, brain cells, DNA,                           glands and lymph          butterflies, or insects,
eggs, embryos, eyes,                               nodes.”                   something to be visited
flesh, genetics, limbs,                                                      and looked at.”
marrow, muscle,
organs, skeleton, skin,
soft tissue, sperm, and
stem cells.”
Charles Byrne (1761-1783) the

Pathology:                               Irish Giant, made his living at
                                         Freak Shows in 18th Century
                                         Britain. Aware that anatomists
Dubious past                             wanted his body for research, his
                                         will stated he wanted to be

or ground-                               buried at sea in an iron coffin.
                                         Three years after his death, the
                                         famous anatomist, John Hunter,
breaking                                 displayed Byrne’s skeleton in his
                                         teaching museum, to much

progress?                                acclaim – but against Byrnes
                                         expressed wishes.

R. Semple. 2007. The Hunterian Museum.
Medical Historian          Legislative                  Public                    Pathologist

“John Hunter was a great   “The first legislation to    “I can’t believe anyone   “This kind of thing, whilst
man of his time, whose     explicitly require consent   would do something like   awful, was a product of
actions, wile morally      for use and display of       this, it’s barbaric and   its time and without it we
dubious with hindsight,    human tissue came into       totally disgusting”.      would not have the
did advance medical        place in 2004.”                                        benefits of modern
knowledge.”                                                                       medicine.”
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