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Organ donation: opt in still the only option
1 December 2008
Last week the Organ Donation Taskforce published another report
into the system of organ donation. It rejects the idea of ‘presumed
consent’ - where organs could routinely be removed from adults who
die unless they have registered to opt out of the system.
Background
This is, of course, not the first time that organ donation has
been considered in recent years. It was only in September 2006 that
the Human Tissue Act 2004 established a new legal framework for the
removal and/or retention of human tissue following the Alder Hey
scandal, which specifically emphasised the importance of prior
explicit consent. The Organ Donation Taskforce itself last reported
on the issue only in January this year, making 14 recommendations
aimed at increasing the number of donors by 50% in five years.
The problem
There are currently over 8 000 people on the transplant waiting
list (rising at 8% per year), but only 3000 transplants were
possible last year and 1000 people died waiting for a suitable
organ to become available. The urgent need to do something to
improve these statistics led the Government to ask the Organ
Donation Taskforce to look again at donation and specifically the
impact of an opt out system. Such a system has vastly improved
donation rates in other countries and has the apparent support of
the majority of the British public, the British Medical Association
and much of the Government itself.
The justification for an opt out system is obvious to its
supporters: more organs available for transplant mean more lives
saved. In addition, since repeated surveys have found up to 90% of
people in favour of donating their organs, but less than 25% on the
Organ Donation Register, it is argued that presuming consent rather
than objection is actually more likely to achieve the wishes of a
deceased person.
The report’s findings
The taskforce considered both a ‘soft’ opt out system, where
bereaved families may object to organs being removed, as well as a
‘hard’ opt out system, where only the deceased’s registered
objection can avoid donation. It found that there was little
evidence to suggest that either opt out system would automatically
lead to a rise in actual transplantations taking place without
corresponding increases in donor coordinators to work with
families, trained clinicians and intensive care beds.
Moreover, setting up an opt out system was considered to be
fraught with practical difficulties including: the cost, ensuring
the register accurately reflected people’s views and was always up
to date, ensuring people wishing to opt out had sufficient
understanding and literacy to be able to do so, the potential for
data misuse and the potential for legal claims under the Human
Rights Act.
Ethical issues
There are also a number of ethical problems with the notion of
presumed consent.
It is argued that ‘presumed consent’ is a contradiction in
terms. Consent is either actively given or it is not, and a
‘presumption of consent’ is just a fiction. After all, if a patient
lacks capacity to give consent, doctors act in the patient’s ‘best
interests’, not with their ‘presumed consent’.
Opponents argue that the idea of presuming consent or, indeed,
taking organs without explicit, active consent would seem to set a
dangerous precedent and mark a return to a paternalistic era of
medicine where the ‘doctor knows best’. In an ever-individualised
healthcare system where personal choice is paramount, making any
decision for a patient would seem improper, let alone one which may
clash with the patient’s cultural, moral or religious views.
Such concerns are reflected in the views of both patient groups
and some doctors who highlight the danger of eroding patients’
trust in doctors. In particular, strong opposition to an opt out
system has been found amongst intensive care specialists. They
worry about the perception amongst patients and their families that
they have a conflict of interest in acting in the best interest of
the patient if they are also looking to harvest the patient’ organs
for others.
The ultimate question about an opt out system therefore remains
unanswered: even if an opt out system would increase the number of
organs available, can the ends really justify the means?
The future
The taskforce did not believe that an opt out system was either
viable or necessary. Instead, it recommended increasing the numbers
of people on the Organ Donation Register by a public awareness
campaign.
While the Government have earmarked £4.5m for this over the next
two years, it has refused to rule out the idea of an opt out system
altogether if the campaign and taskforce’s recommendations prove
unsuccessful. The Welsh Health Minister, meanwhile, has already
rejected an all-party Welsh Assembly report which similarly
discounted an opt out system.
Needless to say, any unilateral introduction of an opt out
system in Wales will itself have major implications for the current
UK-wide transplant system. Should the Government choose to follow
suit, it will be interesting to see how such a move will be
received alongside the proposed introduction of Identity Cards and
the perception of the ‘nanny state’ encroaching first on people’s
everyday lives, and now on their bodies.
talk to us
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Simon Tait
0115 976 6559/0121 237 3913
Partner and Head of Health
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