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All the participants in the Deliberative Mapping project have
assessed the same six 'core' options, and were given the choice of evaluating
a further four 'prompted discretionary' options. Participants were also
free to add further options at their own discretion. Detailed descriptions
of these core and 'prompted discretionary' options are given below.
Core Options
In order to allow uniform comparisons all participants are asked to assess
the following six 'core options'.
- Improving existing transplant services: learning from national
and international best practice. This option is defined by a focus
on improving the promotion, coordination and funding of transplant services
to bring them into line with national and international best practice.
Raising public awareness of existing organ donor schemes. Improving
the education and training of health service staff, and improving the
provision of specialist facilities, such as intensive care unit (ITU)
beds, are all central to this option.
- Altruistic living donation: increasing the number of donors through
voluntary unpaid living donation. This option is defined by action
to promote kidney donation by healthy unpaid living donors. At present
most live donation is between blood relatives. Currently genetically
unrelated donors must be approved by an independent regulatory authority,
to ensure their decision to donate is entirely voluntary and not due
to any coercion or reward. Only a small number of non-blood relatives
(usually husbands, wives or long-term partners) are currently approved
as living donors. One way to expand the number of living donors would
be to establish pools of donors known as 'kidney clubs'. Some people
needing a kidney transplant have a relative or friend willing to donate
a kidney but their blood groups don't match. An exchange could be set
up to allow the willing donor to donate to another member of the kidney
club. In return the relative of the donor would move to the top of the
waiting list for a suitable kidney. This would require a change in UK
law.
- Presumed consent: increasing the number of donors by giving the
medical profession a greater role in making decisions about organ donation.
This option is defined by a change in the legal status of the body following
death. A senior doctor (or doctors) would be given the right to authorise
the use of a person's organs for transplantation following their death,
unless they had previously 'opted out' of organ donation by registering
their objection with a centralized computer register established for
this purpose. Children and adults lacking the capacity to make informed
decisions would be excluded from donation. The close family of the deceased
would still be consulted prior to donation and informed whether the
individual had registered an objection. If a close family member volunteered
information concerning an unregistered objection donation would not
proceed.
- Cross-species (or Xeno-) transplantation: using transplants
from genetically modified (GM) pigs. This option is defined by a
focus on research into the use of kidneys from genetically modified
(GM) pigs to treat human patients. It would be necessary to genetically
modify the pigs as animal-to-human transplants are normally incompatible
and are rejected by the human body. Clinical trials would be undertaken
in accordance with guidelines developed by the UK Xenotransplantation
Interim Regulatory Authority.
- Human tissue engineering (1): using human embryonic stem-cells
to repair or build kidneys. This option is defined by a focus on
research into the use of stem-cells, derived from human embryos, to
produce kidney tissue which can be used to repair patients damaged kidneys
or grow new human organs for transplantation. The use of stem-cells
obtained by both the in-vitro fertilization and the cloning of unfertilized
human eggs are central to this option. In each case the stem-cells must
be removed from the embryo before it reaches the 14-day legal limit
for embryo research, and the embryo destroyed.
- Encouraging healthier living: a preventative approach. This
option is defined by a focus on public education and awareness campaigns
promoting healthy living and action to prevent kidney damage. Targeted
campaigns aimed specifically at high-risk groups to encourage the early
diagnosis and improved long-term management of diabetes and high blood
pressure, through diet and medication, are central to this option.
Prompted Discretionary Options
In addition to the 'core options' listed above, the following 'prompted
discretionary' options may also be considered at the participant's discretion.
- Improving kidney machine technology: building bio-artificial machines
that function more like a real kidney. This option is defined by
a focus on research aimed at improving efficiency and range of functions
carried out by artificial kidney machines so as to reduce the need for
transplants. Current kidney (hemodialysis) machines can only perform
about 10% of the filtration (toxin removal) function of a normal kidney,
and cannot replace other vital functions that the kidney normally carries
out such as the production of hormones. Developments in new materials
technology - such as hollow fibre membranes - and techniques for isolating
and growing adult kidney cells holds out the prospect of producing a
bio-artificial machine which could either be worn continuously or implanted
in the patient and which would replicate the full range functions undertaken
by the kidney.
- Human tissue engineering (2): using stem-cells from adult humans
to repair or build kidneys. This option is defined by research with
the aim of using stem-cells (which can be reprogrammed to develop into
different tissue types) isolated from adult humans to produce kidney
tissue which can be used to repair patients' damaged kidneys or grow
new human organs for transplantation. This option does not rely on the
use of embryos.
- Rewarded giving: providing a small economic incentive for consenting
to organ donation after a person's death. This option is defined
by the state offering to make a limited donation (of say £500)
towards the direct funeral costs of those who donate their organs after
death. For those who have insurance policies covering funeral costs
an equivalent sum could be paid to a registered charity of their choice.
This option would require a change in legislation, as it is currently
illegal to offer any payment for the supply of an organ in the UK.
- Accepting death: placing greater emphasis on dying with dignity.
This option is defined by a focus upon accepting death as a natural
and inevitable part of life. Improved palliative (pain relief and supportive
treatments) and nursing care are central to this option. Also central
is the provision of high quality hospice services for those patients
that wish to use them.
Citizen's Panel Briefing on Options
Participants in the Citizen's Panel process were provided with a short
introductory booklet providing background information on kidney transplantation
and explaining the above options in straightforward language.
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