Research Paper no. 11 2008–09
The future of organ donation in Australia: moving beyond the
‘gift of life’
Matthew
Thomas and Michael
Klapdor
Social Policy Section
3 October 2008
Contents
Executive Summary
- Australia s organ donation and transplantation system does not
meet the nation s present demand for organs and is unlikely to meet
its future needs. This is especially so given that the demand for
transplanted organs is anticipated to continue to grow with the
ageing of Australia s population and the increased incidence of
lifestyle diseases such as obesity and Type 2 diabetes.
- It was in recognition of the failings of Australia s organ
donation and transplantation system that the Howard Government
established the National Clinical Taskforce on Organ and Tissue
Donation in 2006. This Taskforce was to provide evidence-based
advice to government on how the system might be changed so as to
improve the rate of safe, effective and ethical donation for
transplantation in Australia. The Taskforce submitted its final
report in January 2008, and some of this report s recommendations
are reflected in the Rudd Government s proposed new national reform
package, announced on 2 July 2008. The Australian Organ and Tissue
Donation and Transplantation Authority Bill 2008, introduced to the
Parliament on 18 September 2008, would, if passed, provide the
legislative framework for the proposed reform package.
- Some of the Taskforce s recommendations and the government s
proposed reforms would be likely to improve, in the short- to
medium-term, Australia s overall rates of organ donation and
transplantation. However, to the extent that the Taskforce s
recommendations and the government s proposed reforms do not depart
from the terms of a gift of life doctrine, they are unlikely to
result in increased organ donation rates sufficient to meet
Australia s current or future needs.
- The gift of life doctrine insists that organ donation is an
altruistic, egalitarian and essentially moral act. This paper
argues that the gift of life doctrine may be viewed as being flawed
on a number of grounds, and that any changes made to Australia s
organ donation and transplantation system in the future should be
premised, first and foremost, on an understanding of the act of
donation as that of a rational, autonomous decision-maker.
- Not only would this provide an accurate basis for Australia s
organ donation and transplantation system, but it would also allow
for the widest possible range of motivations for organ donation
while not compromising people s ability to make ethical choices in
donation. At the same time, grounding Australia s organ donation
and transplantation system on the notion of a rational, autonomous
decision-maker could enable a number of changes to this system, the
ultimate outcome of which may be an increased number of organs
available for transplantation and more saved Australian and New
Zealand lives.
|
|
ADAPT
|
Australasian Donor Awareness Program
|
|
ACCORD
|
Australian Coordinating Committee for Organ
Registries and Donation
|
|
AHMAC
|
Australian Health Ministers' Advisory
Council
|
|
AHMC
|
Australian Health Ministers' Conference
|
|
ALRC
|
Australian Law Reform Commission
|
|
ANZICS
|
Australian and New Zealand Intensive Care
Society
|
|
ANZOD
|
Australia and New Zealand Organ Donation
Registry
|
|
AODR
|
Australian Organ Donor Registry
|
|
dpmp
|
Donations per million population
|
|
IRODaT
|
International Registry of Organ Donation and
Transplantation
|
|
NHMRC
|
National Health and Medical Research
Council
|
|
NODC
|
National Organ Donor Collaborative
|
|
ONT
|
Organizaci n Nacional de Trasplantes (Spanish
National Organisation for Transplants)
|
|
RTA
|
Roads and Traffic Authority (NSW)
|
|
TGA
|
Therapeutic Goods Administration
|
Acknowledgements
Thanks to two external readers and Parliamentary Library staff who
provided helpful comments on earlier drafts of this Research Paper.
The authors remain responsible for any errors or omissions.
Introduction
Despite widespread public support for the
concept of organ donation in Australia, the nation has one of the
lowest rates of organ donation in the world.
Without an increase in the rate of organ
donation in Australia, Australians suffering from life-threatening
illnesses and awaiting an organ donation will continue to die at an
ever increasing rate.
In this context, there is substantial interest
in finding ways of translating Australians stated commitment to
organ donation into improved actual organ donation rates. It was
with this goal in mind that a National Clinical Taskforce on Organ
and Tissue Donation was established by the Howard Government in
October 2006. The Taskforce was to provide the Australian
Government with evidence-based advice on ways to improve the rate
of safe, effective and ethical organ, eye and tissue donation for
transplantation in Australia. In January 2008, the Taskforce
submitted its final report, which was intended to serve as the road
map for reform of the sector with a view to lifting the organ donor
rate in the future. This report identified significant systemic
problems within the Australian organ donation and transplantation
sector, and contained six critical areas for action and 51 separate
recommendations for improving Australia s organ donation and
transplantation system. On 2 July 2008, the Rudd Labor Government
announced a proposed national reform package intended to establish
Australia as a world leader in organ donation for transplantation
.[1] The reform
package was endorsed by the Council of Australian Governments on 3
July 2008, and a Bill to implement the measures contained in the
package introduced to the Parliament on 18 September 2008.[2] The proposed package
follows in all its essentials the recommendations of the
Taskforce.
It is likely that implementation of a number
of the Taskforce s recommendations would improve the rate of organ
donation and transplantation in Australia, at least in the short-
to medium-term. International experience and, closer to home, South
Australia s experience, has shown that a standardised donation
process in hospitals, combined with a proactive donor detection
program performed by well-trained transplant coordinators, can help
to convert many potential donors into actual donors.[3]
However, the Taskforce s recommended changes
are neither likely to meet the existing need for organs, nor to
provide for a sustainable supply of organs into the future.
In certain key respects, the Taskforce s
considerations may be viewed as being confined within the terms of
a gift of life doctrine. This doctrine emphasises that donation is
and must be grounded in altruism and egalitarianism. Such a
doctrine does not allow for consideration of a number of possible
options for improving organ donation systems operations and for
expanding the amount of organs available for transplantation
options that have been implemented in other countries. To the
extent that the Taskforce did not depart from aspects of the gift
of life doctrine, the range of options proposed by the Taskforce
for improving the organ donation system in Australia, and for
expanding the number of organs available for transplantation, was
delimited. In the terms of its own analogy, it may be argued that
the Taskforce provided the government with only a partial road map
for reform, one that represents only a portion of the territory.
Moreover, in as much as the Taskforce s road map does not challenge
the principles that are central to the gift of life doctrine, it
is, arguably, premised on a flawed and unrealistic notion of organ
donation, and of human nature.
The paper is divided into two separate parts.
The first part is largely descriptive. It examines the organ
donation sector in Australia as it currently stands, and the
National Clinical Taskforce s assessment of this sector. The paper
then identifies the perceived merits of the Taskforce s
recommendations for change, and the source of the constraint on the
Taskforce s recommendations for reforms.
The second part of the paper explains an
alternative basis and approach to organ donation in Australia. It
discusses the gift of life and problems with this doctrine, before
identifying policy options for improving organ donation in
Australia that are foreclosed through such a doctrine.
Specifically, the paper considers opt-in versus opt-out (or
presumed consent) arrangements, questions of transparency and
informed consent in donation, the issue of directed and
non-directed donation, next-of-kin consent arrangements and the
option of payment and incentives for organ donation.
Part
1
Organ donation involves the removal of tissue from one person s
body to allow the transplantation of that tissue into another
person s body. Whole organs such as the heart, lungs, liver,
pancreas and kidneys can be donated, as well as sections of tissue
such as heart valves, corneas, tendons and skin. Organs and tissue
are usually removed from people who have recently died. Indeed,
because organs for transplantation need to be removed soon after
death, very few people die in a way that enables them to donate
organs. However, kidneys and parts of the liver and pancreas may
also be removed for transplantation from living donors. The removal
of organs and tissue is a surgical procedure that, in Australia,
takes place in a hospital operating theatre. Organ transplantation
is an effective procedure for those people who are facing the
possibility of organ failure, leading to debility or death.
The process of donating and transplanting
organs in Australia is complex and involves a large number of
people and organisations acting in diverse roles. Apart from
individual donors and recipients and their families themselves,
there is a large organ transplantation sector and many mechanisms
in place to allow for transplantation to occur.
The National Clinical Taskforce has identified
a number of key stakeholders that make up the organ donation and
transplantation sector in Australia. These stakeholders, along with
the roles they fulfil, are:
- regulatory bodies, such as the Therapeutic Goods Administration
(TGA), are responsible for regulation and licensing, and the
National Health and Medical Research Council (NHMRC) provides
advice on ethical issues
- professional colleges and societies are involved in developing
clinical guidelines and representing health workers. Professional
education programs are developed through agencies such as the
Australasian Donor Awareness Program (ADAPT)
- eye and tissue banks, which are usually state-based, coordinate
the retrieval of eyes, bones, skin, heart valves and
musculoskeletal tissue
- state-based organ donation agencies are responsible for
promoting and coordinating organ donation within their
jurisdictions
- transplant centres within hospitals are specialised locations
where transplantation of certain organs can occur
- organ donation-related data collection is primarily undertaken
through the Australia and New Zealand Organ Donation Registry
(ANZOD). ANZOD draws together information collected through
organ-specific registries
- the Australian Organ Donor Register (AODR) and the NSW Roads
and Traffic Authority act as registers of consent for the donation
of organs following death, and
- community organisations, including peak bodies and foundations,
develop awareness campaigns, while other disease-specific groups
such as Kidney Health Australia are also involved in promoting
organ donation.[4]
A wide range of data on organ donation and
transplantation in Australia, including rates of donation,
characteristics of organ donors and rates and outcomes of organ
transplantation, are collected and made available. The following
tables present the most recent available data from the Australia
and New Zealand Organ Donation Registry (ANZOD) on actual deceased
donors along with a summary of actual deceased donor and donors per
million population (dpmp) rates by year and by state and territory
for the years 1989 to 2007.
These data indicate that the overall number of
organ donors in Australia has remained relatively constant over the
years, with some variation evident between jurisdictions. The
median rate of dpmp for Australia as a whole is 10 dpmp. As
indicated above, in terms of dpmp, South Australia has consistently
out-performed the other states, with a median rate of 17 dpmp.
There are no accurate figures available on
what percentage of those who have died were potential organ donors.
Obtaining statistics on the number of potential donors has been
identified as a crucial factor in being able to improve actual
donation rates as well as to assist in comparing the performance of
different methods used to improve rates.[5] The Australian Organ Donor Register
(AODR) states that less than one per cent of all those who die in
hospital each year are declared brain dead and are able to donate
their organs.[6]
However, a 2006 study of potential donors in Victorian hospitals
found that it was the practice of some clinicians to not formally
diagnose brain death in patients unless family members have
consented to organ donation.[7] This study audited deaths in 12 hospitals between 2002
and 2004. Of 17 230 deaths, 106 were actual donors. Of the
remainder, 280 were identified by the audit as realistic potential
donors and 116 as potential donors with next-of-kin
consent.[8] These
figures indicate that 1.6 per cent of all hospital deaths in the
audited hospitals were realistic potential donors. The study found
that there was a next-of-kin consent rate of 53 per cent and, after
taking into account the unavoidable loss of 10 of the potential
donors with next-of kin-consent, only 38 per cent of potential
donors became actual organ donors.[9] Although the number of potential organ donors is
not entirely clear, the study of Victorian hospitals and AODR
figures indicate that this number is very low, and highlight the
importance of maximising the actual donors within this cohort.
The final tables in this section detail the
number of Australians on waiting lists for organs by type of organ
and jurisdiction as well as over time. Waiting list numbers for
organ transplantation have not changed significantly over the past
decade. A significant majority of those patients on organ
transplant waiting lists are awaiting kidney transplants, with
livers and lungs the next most frequent organs in demand. In 2006,
the average waiting time for a kidney transplant was 3.79 years
from a deceased donor and 1.38 years from a living donor. In the
same year, the average waiting time for a liver transplant was 205
days, for a heart transplant, 145 days and for a lung transplant,
187 days. The mean waiting time for a pancreas in 2006 was 1.9
years and for a pancreas islet, 1.4 years.[10]
|
2008 monthly totals - number of actual deceased
donors
|
| |
Jan
|
Feb
|
Mar
|
Apr
|
May
|
Jun
|
Jul
|
Aug
|
Total
|
|
ACT
|
1
|
0
|
0
|
0
|
1
|
0
|
0
|
2
|
4
|
|
NSW
|
5
|
6
|
2
|
4
|
4
|
5
|
10
|
6
|
42
|
|
NT
|
0
|
0
|
0
|
1
|
1
|
0
|
1
|
0
|
3
|
|
QLD
|
6
|
4
|
2
|
3
|
6
|
5
|
3
|
7
|
36
|
|
SA
|
3
|
4
|
3
|
2
|
3
|
1
|
4
|
6
|
26
|
|
Tas
|
0
|
0
|
2
|
0
|
1
|
0
|
1
|
2
|
6
|
|
Vic
|
10
|
4
|
8
|
3
|
5
|
5
|
1
|
7
|
43
|
|
WA
|
1
|
0
|
2
|
4
|
1
|
2
|
2
|
3
|
15
|
|
Australia
|
26
|
18
|
19
|
17
|
22
|
18
|
22
|
33
|
175
|
|
Summary of donors by year 1989 2007: number of actual
deceased donors
|
|
ACT
|
NSW
|
NT
|
QLD
|
SA
|
Tas
|
Vic
|
WA
|
Australia
|
|
1989
|
3
|
86
|
2
|
37
|
19
|
2
|
65
|
17
|
231
|
|
1990
|
5
|
74
|
1
|
38
|
27
|
2
|
45
|
11
|
203
|
|
1991
|
4
|
72
|
2
|
46
|
15
|
2
|
45
|
23
|
209
|
|
1992
|
0
|
70
|
0
|
66
|
20
|
4
|
42
|
14
|
216
|
|
1993
|
6
|
68
|
3
|
44
|
23
|
6
|
52
|
19
|
221
|
|
1994
|
2
|
71
|
1
|
38
|
23
|
6
|
26
|
16
|
183
|
|
1995
|
7
|
60
|
1
|
34
|
23
|
4
|
38
|
17
|
184
|
|
1996
|
6
|
63
|
3
|
35
|
25
|
1
|
49
|
12
|
194
|
|
1997
|
4
|
65
|
4
|
37
|
25
|
5
|
42
|
8
|
190
|
|
1998
|
2
|
63
|
3
|
40
|
35
|
0
|
40
|
13
|
196
|
|
1999
|
2
|
48
|
3
|
20
|
30
|
6
|
42
|
13
|
164
|
|
2000
|
5
|
55
|
2
|
37
|
30
|
1
|
44
|
22
|
196
|
|
2001
|
7
|
47
|
2
|
48
|
25
|
3
|
40
|
13
|
185
|
|
2002
|
6
|
55
|
2
|
44
|
31
|
6
|
47
|
15
|
206
|
|
2003
|
8
|
46
|
1
|
40
|
22
|
2
|
42
|
18
|
179
|
|
2004
|
6
|
63
|
1
|
39
|
39
|
2
|
45
|
23
|
218
|
|
2005
|
9
|
54
|
4
|
35
|
20
|
2
|
50
|
30
|
204
|
|
2006
|
4
|
49
|
2
|
36
|
36
|
8
|
46
|
21
|
202
|
|
2007
|
1
|
53
|
3
|
39
|
27
|
1
|
55
|
19
|
198
|
|
Total
|
87
|
1162
|
40
|
753
|
495
|
63
|
855
|
324
|
3779
|
|
Summary of donors by year 1989-2007: donors per million
population
|
|
ACT a
|
NSW a
|
NT
|
QLD
|
SA
|
Tas
|
Vic
|
WA
|
Australia
|
|
1989
|
11
|
15
|
12
|
13
|
13
|
4
|
15
|
11
|
14
|
|
1990
|
18
|
13
|
6
|
13
|
19
|
4
|
10
|
7
|
12
|
|
1991
|
14
|
12
|
12
|
16
|
10
|
4
|
10
|
14
|
12
|
|
1992
|
0
|
12
|
0
|
22
|
14
|
9
|
9
|
8
|
12
|
|
1993
|
20
|
11
|
17
|
14
|
16
|
13
|
12
|
11
|
13
|
|
1994
|
7
|
12
|
6
|
12
|
16
|
13
|
6
|
9
|
10
|
|
1995
|
23
|
10
|
6
|
10
|
16
|
8
|
8
|
10
|
10
|
|
1996
|
12
|
10
|
16
|
10
|
17
|
2
|
11
|
7
|
11
|
|
1997
|
8
|
11
|
21
|
11
|
17
|
11
|
9
|
4
|
10
|
|
1998
|
4
|
10
|
16
|
12
|
23
|
0
|
9
|
7
|
10
|
|
1999
|
4
|
8
|
16
|
6
|
20
|
13
|
9
|
7
|
9
|
|
2000
|
10
|
9
|
10
|
10
|
20
|
2
|
9
|
12
|
10
|
|
2001
|
14
|
7
|
10
|
13
|
17
|
6
|
8
|
7
|
10
|
|
2002
|
12
|
9
|
10
|
12
|
20
|
13
|
10
|
8
|
10
|
|
2003
|
15
|
7
|
5
|
11
|
14
|
4
|
9
|
9
|
9
|
|
2004
|
12
|
10
|
5
|
10
|
25
|
4
|
9
|
12
|
11
|
|
2005
|
17
|
8
|
20
|
9
|
13
|
4
|
10
|
15
|
10
|
|
2006
|
7
|
7
|
10
|
9
|
23
|
16
|
9
|
10
|
10
|
|
2007
|
2
|
8
|
14
|
9
|
17
|
2
|
11
|
9
|
9
|
|
Median
|
12
|
10
|
10
|
11
|
17
|
4
|
9
|
9
|
10
|
a NSW population excludes residents
of the Southern Area Health Service (included in ACT
population)
Source: Australia and New Zealand Organ
Donation Registry (ANZOD), Summary of Organ Donation 2008 :
http://www.anzdata.org.au/anzod/Updates/anzodsummary.htm#Donors,
accessed on 12 August 2008.
|
Waiting lists for organs (number of people): January
2008
|
|
Organs
|
NSW/ACT
|
QLD
|
SA/NT
|
VIC/TAS
|
WA
|
Australia
|
|
Kidney
|
731
|
124
|
69
|
368
|
96
|
1388
|
|
Liver
|
64
|
32
|
18
|
37
|
12
|
163
|
|
Heart
|
26
|
6
|
|
13
|
8
|
53
|
|
Heart/Lung
|
2
|
1
|
|
3
|
|
6
|
|
Lung
|
30
|
13
|
|
51
|
6
|
100
|
|
Pancreas/Kidney
|
22
|
|
|
16
|
|
38
|
|
Pancreas
only
|
1
|
|
|
1
|
|
2
|
|
Pancreas
Islets
|
4
|
|
|
3
|
|
7
|
|
Total
|
880
|
176
|
87
|
492
|
122
|
1757
|
Source: Australia and New Zealand Organ Donor
Registry, Registry Report 2008, ANZOD, http://www.anzdata.org.au/anzod/ANZODReport/anzodreport.htm#2008,
accessed on 26 August 2008.
|
Number of donors, transplants and number on waiting list
1991-2007
|
|
Donors
|
Transplants
|
Waiting List
|
|
1991
|
209
|
662
|
1308
|
|
1992
|
216
|
719
|
1706
|
|
1993
|
221
|
717
|
1529
|
|
1994
|
183
|
674
|
1678
|
|
1995
|
184
|
699
|
1839
|
|
1996
|
194
|
686
|
1697
|
|
1997
|
190
|
706
|
1766
|
|
1998
|
196
|
692
|
1711
|
|
1999
|
164
|
564
|
1788
|
|
2000
|
196
|
675
|
1764
|
|
2001
|
185
|
616
|
1955
|
|
2002
|
206
|
721
|
1788
|
|
2003
|
179
|
634
|
1824
|
|
2004
|
218
|
789
|
1663
|
|
2005
|
204
|
736
|
1716
|
|
2006
|
202
|
740
|
1690
|
|
2007
|
198
|
668
|
1757
|
Sources: Australia and New Zealand Organ Donor
Registry, Registry Report 2008, ANZOD, http://www.anzdata.org.au/anzod/ANZODReport/anzodreport.htm#2008
and Registry Report 2002, http://www.anzdata.org.au/anzod/v1/AR-2002.html,
accessed on 26 August 2008.
Under Australia s federal legal system, legal
regulation of organ donation is the responsibility of the states
and territories. Each state and territory has separate legislation
covering organ donation and transplantation, including laws
governing consent for organ donation. Not only is there no
Commonwealth legislation governing organ donation, but there is
also no national coordinating body or agency with legislated
powers. As a result, legislation and regulation of Australia s
organ donation and transplantation sector, which covers a broad
range of activities and procedures, differs across the country.
While there is no Commonwealth legislation concerning organ
donation, there are some general guidelines and protocols that are
applicable to all states. These guidelines and protocols are
discussed below.
State and territory legislative frameworks
relating to transplantation are based on the notion of informed
consent. Individuals can choose to express consent for their organs
to be taken in the event of their death. Where people give their
consent for their organs to be used for transplantation purposes,
this consent is recorded on a centralised register. This consent
takes the form of a legal agreement that their organs can be used,
if needed, for transplantation. However, registration of consent is
not a legally-binding directive. Under different state and
territory legislation, consent can be expressed in a variety of
different ways. In NSW and Queensland, for example, donation may
only proceed where the deceased has previously given written
consent. In Victoria, consent can be given in writing or orally
during the last stages of illness of the deceased. In other states
and territories, the form that the expression of consent for organ
donation must take is not specified.
In cases where no legal consent has been
registered, next-of-kin or close family members are able to give
consent for organs of the deceased to be donated. Where the
deceased person s next-of-kin cannot be contacted, the states and
territories differ with regard to the question of whether or not
they allow donation to proceed. In NSW, WA and Tasmania, where no
consent was registered by the deceased and a next-of-kin cannot be
contacted, donation may not proceed. In Victoria, SA, NT and ACT,
where reasonable attempts have been made to contact the next-of-kin
and there is no reason to believe that either the family or the
deceased would object to the deceased s organs being donated, then
donation can lawfully proceed.[11]
Not all state and territory legislation
requires that family members be consulted as to whether or not
organ donation should occur. However, in practice, whether or not
an individual has expressed their consent for donation, family
members are always consulted.[12] Donation will not occur where family members are
strongly opposed to such a procedure, even when the deceased person
s consent has been registered.
For the purposes of organ donation and
transplantation within a given jurisdiction, it is necessary to
have an agreed-upon definition of death. The two most frequently
used definitions are brain death and/or cardiac death.
In 1977, an Australian Law Reform Commission
(ALRC) report on organ donation and transplantation recommended
that a statutory definition of death be introduced into Australian
law that could be applied generally, and not only in the context of
transplantation.[13] All state and territory legislation that applies to
organ donation includes a definition of death, with the exception
of SA and WA. South Australia has the separate Death Definition
Act 1983 and WA legislation does not explicitly define death.
The ALRC report recommended that death be defined as either the
irreversible cessation of all function of the brain of the person
or irreversible cessation of circulation of blood in the body of a
person .[14]
Although these definitions leave the determination of detailed
criteria to medical professionals (see below), they form the basis
of state and territory statutory definitions. The definition used
in Queensland s Transplantation and Anatomy Act 1979 is
used only for the purposes of that particular act.
As indicated above, Western Australia is the
only state or territory not to include a definition of death in its
legislation. However, the section of the WA Human Tissue and
Transplant Act 1982 relating to the authority of designated
officers, states that tissue or organs shall not be removed from a
body for the purposes of transplantation unless two medical
practitioners with specific qualifications (that vary from state to
state) have declared that the irreversible cessation of all
function of the brain of the person has occurred .[15]
The main pieces of state and territory
legislation relating to organ donation and transplantation are
the:
- Transplantation and Anatomy Act 1978
(ACT)
- Human Tissue Act 1983 (NSW)
- Human Tissue Transplant Act 1979
(NT)
- Transplantation and Anatomy Act 1979
(QLD)
- Transplantation and Anatomy Act 1983
(SA)
- Human Tissue Act 1985 (Tas)
- Human Tissue Act 1982 (Vic) and
the
- Human Tissue and Transplant Act 1982
(WA).
The Australia Organ Donor Register (AODR),
which is overseen by Medicare Australia, is now the primary
register of consent in Australia. It is a register of consent for
donated organs to be used for transplantation purposes alone, and
not for scientific or other purposes. The AODR was established in
2000 as a national register of people s intent to donate. Following
a review in 2004 05, the Australian Health Ministers Conference
(AHMC) decided that the AODR would be changed from a register of
intent to a register of consent. The stated aim
of this change was to ensure that the known wishes of the deceased,
whether consenting or objecting, are respected and followed through
.[16] However, as
indicated above and discussed in further detail later in this
paper, to register consent is not to make a legally-binding
directive. In most states and territories, legislation only makes
provisions for the expression of a wish to donate.
Therefore, as it stands, the AODR can not meet the stated aims of
the AHMC.
It is currently possible to register consent,
intent to consent or an objection to donation. Registrations of
consent or objection to organ donation are only possible for people
who are over the age of 18, through signing the appropriate form.
Registrations of intent can be performed online by anyone over the
age of 16 with a Medicare number. A registration of an objection to
organ donation by the person concerned is recognised by most
jurisdictions in Australia, and will override any other decision
made by a family member. However, based on anecdotal evidence, the
National Clinical Taskforce has reported that, in some
jurisdictions, donation can still occur if the next-of-kin have
given their consent, despite a registered objection by the
deceased.[17]
NSW and SA continue also to operate their own
donor registration system through the Roads and Traffic Authority
and Transport SA, respectively. Under this system, individuals are
able to indicate their consent or objection on their driver s
licence application form (in addition to registration on the AODR).
Before the introduction of the AODR, all states collected
information on organ donation through the driver s licence
application process. Almost all of the state-collected registration
data was transferred to the AODR as registrations of intent. Some
concerns have been expressed regarding the quality of these
data.[18] Consent
registrations transferred to the AODR can be accepted as consent to
donate in all jurisdictions except Queensland. SA continues to
collect registrations but provides the information to the AODR. NSW
does not automatically transfer registrations it collects through
the RTA to the AODR.
Following the changes made to the AODR in
2005, the Australian Health Ministers Advisory Council (AHMAC)
charged the National Health and Medical Research Council (NHMRC)
with undertaking a review of its guidelines, Recommendations
for the Donation of Cadaveric Organs and Tissues for
Transplantation (1996). This review also considered background
papers from the Australian Health Ethics Committee and conducted
consultations with relevant groups and stakeholders. The new NHMRC
guidelines, Organ and Tissue Donation After Death, For
Transplantation, provide a guide to ethical standards relating
to organ donation for health professionals. The guidelines are
based on the principles that:
- donation of organs and tissues is an act of altruism and human
solidarity
- organs and tissues for transplantation should be obtained in
ways that:
-
- demonstrate respect for all aspects of human dignity
- respect the wishes, where known, of the deceased
- give precedence to the needs of the potential donor and the
family over the interests of organ procurement
- as far as possible, protect recipients from harm and
- recognise the needs of all those directly involved, including
the donor, recipient, families, carers, friends and health
professionals
- organ and tissues should be allocated according to just and
transparent processes
- the choice not to donate should be respected and the family
shown understanding for the decision.[19]
The guidelines also provide advice as to how
authorisation of donation should be determined where there is no
next-of-kin available, as well as providing ways to ensure that
family members make an informed decision regarding the donation of
the deceased s organs.
A number of guidelines and protocols have been
prepared to guide the clinical procedures involved in organ
donation. The primary protocols are the Australian and New
Zealand Intensive Care Society (ANZICS) Statement on Death and
Organ Donation, the Australian Transplant Coordinators
Association National Guidelines for Organ and Tissue Donation,
and the Transplantation Society of Australia and New Zealand s
protocols on organ allocation.
The purpose of the ANZICS Statement on
Death and Organ Donation is to provide a resource for
intensive care specialists and other health care workers who are
involved in the determination of death and the care of potential
organ donors.[20]
The statement emphasises a view of death as a process rather than
as an event and, in keeping with this emphasis, the determination
of death indicates that an irrevocable point in this process has
been reached, and not that the process has ended.[21] A determination of when this
irrevocable point has been reached with the occurrence of brain
death requires that: there is unresponsive coma, there are no
brainstem reflexes, and the respiratory centre has ceased to
function. These function failures must be considered irreversible
and there must be clear evidence (through clinical tests or
imaging) of the irreversible loss of neurological function.[22]
The ANZICS statement points out that the
definition of brain death that is used in Australia and New Zealand
is different from that which is primarily used in the United
Kingdom, in that whole brain death must occur to meet legal
requirements for the determination of death in Australia and New
Zealand, whilst in the UK brainstem death is the standard (even
when there is still blood flow in other cerebral areas).[23] The ANZICS statement
outlines the clinical tests that may be used in making a
determination of brain death and makes clear that it is more
difficult to ascertain brain death in infants, requiring slightly
different procedures.
The ANZICS statement also provides detail on
the determination of death for cases of donation after cardiac
death. Cardiac death was the primary determinant of death for the
purposes of organ donation prior to the recognition of brain death
as death. Circulation is maintained for the removal of organs from
brain-dead patients. This allows for the preservation of organs and
for an extended timeframe in which to proceed to donation. However,
organs can also be removed and used for transplantation within a
short period following cardiac death. In the past, it was mostly
kidneys that were able to be successfully transplanted following
cardiac death.[24]
Following improvements in clinical procedures and the development
of specific protocols for the donation of organs after cardiac
death there has been an increase in the number of organs such as
livers and lungs that are available for transplantation.[25] Donation after cardiac
death usually occurs where patients are not considered to fulfil
brain death criteria but are awaiting cardiac arrest and will not
survive. Treatment is withdrawn from these patients following
family discussion and agreement.[26] Donation can also occur following cardiac arrest
in a patient already considered brain dead.
The ANZICS statement also takes a stance on a
number of other issues, including questioning the validity of
consent registered with the AODR:
Opinions differ on whether a person can truly
consent to the performance of a post-mortem process on their body
and whether the concept of autonomy persists after death. The
situation is not analogous to an advance directive for personal
health services Even if consent were possible under these
circumstances, the process of registration in the AODR does not
meet the general standard of informed consent for personal
healthcare .[27]
ANZICS supports the view that any objection by
the family to organ donation, even when it is in conflict with the
known intention of the deceased, should be respected. In keeping
with this stance, ANZICS does not endorse any sort of pressure
being placed on the family to acquiesce to the deceased s wishes
(although it does concede that it is reasonable that those wishes
be discussed) including any recommendation that compliance with
these wishes is expected, mandated by law or regulation, or is of a
greater moral worth.[28]
The Australasian Transplant Coordinators
Association National Guidelines for Organ and Tissue Donation
provide similar clinical guidelines to those contained in the
ANZICS statement, albeit with more detail on transplantation
procedures and specific clinical methods. These guidelines also
differ from the ANZICS statement in that they provide an overview
of different religious views on organ donation.[29]
The Transplantation Society of Australia and
New Zealand s organ allocation protocols provide guidelines for
assessing the suitability of organs for transplantation and for
determining their allocation to recipients. There are separate
protocols for liver, pancreas, heart, lung, kidney and cornea
transplantation, as well as basic principles regarding the exchange
of organs between Australia and New Zealand. The exchange of organs
between the two countries is not based on a formal
inter-governmental agreement but upon operational agreements
between relevant agencies.
The first national coordinating body
established to deal with issues relating to organ donation was
AHMAC s Donor Organ Working Party, established in 1987. This body
identified some of the key issues facing the transplantation
sector, including the fragmented nature of coordination, separate
procedures in each state for donation and procurement, limited
information for the development of awareness campaigns and
inadequate funding of coordination mechanisms.[30] In response, AHMAC established
the National Coordinating Committee on Organ Transplantation in
1989 which was later revised and became the Australian Coordinating
Committee for Organ Registries and Donation (ACCORD). ACCORD was
responsible for the development of the Australasian Donor Awareness
Program (ADAPT), aimed at the education of medical professionals
involved in the donation process, and the setting up of heart-lung,
liver, pancreas, and bone marrow registries. ACCORD also
established the National Organ Donor Registry in 1990. This
registry is now known as the Australia and New Zealand Organ
Donation Registry (ANZOD). ANZOD now functions as a collaborative
effort between the Australasian Transplant Coordinators Association
and the Australia and New Zealand Dialysis and Transplant Registry,
compiling data on donation and transplantation in Australia and New
Zealand.
Until recently, Australians Donate served as
the officially recognised peak national body for organ donation for
transplantation purposes. Australians Donate was established by the
Commonwealth Government in recognition of the need for a more
concerted, coordinated national donation and transplantation
program .[31] The
organisation was charged with raising public awareness about organ
donation and with developing programs to increase rates of organ
donation in Australia. A 2007 review of Australians Donate found
that the organisation was not successful in meeting many of its
objectives and had not performed effectively in terms of acting as
a peak body or in terms of project delivery.[32] As a result, Australians Donate was
disbanded on 1 April 2008 and, following the recommendations of the
National Clinical Taskforce on Organ and Tissue Donation,
legislation to establish a proposed new national organ and tissue
donation authority was introduced to the Parliament on 18 September
2008.
The transplantation of tissue and organs began
in Australia in the 1940s, with the first report of a cornea
transplant appearing in the Medical Journal of Australia
in 1941.[33] The
first Australian attempt at a kidney transplant from a deceased
donor occurred at the Royal Melbourne Hospital in 1956, but was
unsuccessful. Following a number of organ transplantation successes
overseas and the development of improved methods, further liver
transplants were undertaken in Australia in 1963 and 1964. However,
in each case, the transplanted organs only functioned for a very
short period of time. The first noteworthy success in renal
transplantation in Australia occurred at the Queen Elizabeth
Hospital in Adelaide in 1965, with the live transplantation of a
kidney to a young man from his father-in-law, who shared the same
blood type. The kidney began working immediately and continued to
do so for 10 years, after which the recipient died from liver
failure.[34]
Successful liver, heart, pancreas, lung and bone marrow transplants
were to take place in the following decades. The first Australian
heart transplant was undertaken in 1968, but the recipient only
survived for a further 45 days. Subsequent attempts were made at
heart transplantation, but it was not until the establishment of
the National Heart Transplant unit at St Vincent s Hospital in
Sydney in 1983 that high success rates in heart transplantation
were achieved.
A number of factors have influenced the
success or otherwise of tissue and organ transplantation in
Australia and elsewhere. These include the development of surgical
techniques in transplantation, the use of different
immunosuppressants, the compatibility of donors and recipients, the
establishment of cooperative registries nationally to improve the
coordination of donation and transplantation, the experimental
nature of many of the operations, the shortage of potential donors
and, of particular importance, the legal definition of
death.[35] Prior to
the concept of brain death, the clinical criteria for the
determination of death were based upon the cessation of respiration
and the circulation of blood. This meant that it was necessary to
discontinue artificial respiration and to wait until the heart had
stopped beating before an organ retrieval operation could
begin.[36] This
delay not only prevented the possibility of routine transplantation
of organs such as hearts and lungs, but it also resulted in
frequent damage to donated kidneys.[37]
The transplantation of organs is now an
established procedure for those at risk of end-stage organ failure
or suffering from diseases which severely limit their life
expectancy. In some cases, a patient s condition may require more
than one organ to be transplanted such as a heart and lungs or
kidney and a pancreas. Other transplantation procedures include the
replacement of corneas, heart valves and musculoskeletal tissue in
the case of, respectively, eye conditions, major heart valve
disorders and damaged tissue and skin. Advanced surgical procedures
and technological innovations are allowing for greater success in
transplantation, for new conditions to be treated, and for an
increase in the availability of suitable organs and tissue. One
example of this is the procedure of split liver transplantation, in
which a small part of a donated liver is able to be transplanted
into a child and the larger part of the same liver into an adult.
Other procedures being developed and trialled include the use of
animal organs and tissue (xenotransplantation), multiple limb
transplants, and the growth of organs in laboratories for use in
transplantation.[38]
Legislation, regulation, coordination and
medical practice relating to organ donation and transplantation are
markedly different in countries around the world. Key differences
relate to the way in which the entire transplantation sector is
coordinated nationally, different systems of consent (opt-in and
opt-out), the way in which organ donation and transplantation is
carried out within hospitals and public attitudes towards and
awareness of organ donation. Comparisons between countries
typically aim to identify the reasons for widely differing donation
rates, both as a means to develop ways to raise rates of donation,
and to improve coordination efforts and clinical practice.
The most widely-used methodology for measuring
and comparing organ donation rates internationally is the donors
per million population (dpmp) method. This method compares rates of
donation against population counts. This statistic does not take
into account either the number of potential donors (those located
in an intensive care unit and identified as being suitable) or the
number of organs taken from each individual donor. Different
countries also define deceased organ donor in different ways when
compiling their statistics.[39] Nevertheless, this method remains the current
means of international comparison. The table below compares the
rates of various countries, as at 2007.
|
2007 Number of deceased donors (selected
countries)
|
|
Country
|
Total Number
|
Donors per million population
|
|
Spain
|
1550
|
34.3
|
|
Belgium
|
291
|
28.0
|
|
France
|
1604
|
25.4
|
|
USA
|
7413
|
24.6
|
|
Austria
|
187
|
23.6
|
|
Italy
|
1192
|
20.9
|
|
Norway
|
94
|
19.9
|
|
Germany
|
1313
|
16.0
|
|
Netherlands
|
257
|
15.5
|
|
Sweden
|
133
|
14.5
|
|
Argentina
|
493
|
12.2
|
|
Poland
|
352
|
9.2
|
|
Australia
|
198
|
9.0
|
|
New
Zealand
|
38
|
9.0
|
|
Israel
|
56
|
7.7
|
|
Iran
|
170
|
2.4
|
|
Japan
|
13
|
0.1
|
Source: A. Sanz et al, 2007 International
donation and transplantation activity. IRODaT preliminary figures ,
Organs, Tissues and Cells, Vol. 1, No. 7 10, 2008,
http://www.etco.org/irodat/new/Irodat07.pdf
accessed on 1 September 2008.
As can be seen from the above table, Spain
currently has the highest rate of organ donation in the world
largely due to its commitment to improving organ donation rates
throughout the country s entire health care system. As a result,
many other countries have drawn on aspects of Spain s organ
donation and transplantation sector in an attempt to lift their own
rates selectively so in Australia s case. Elements of the Spanish
system that have been emulated by other countries include the
national coordination of all aspects of the organ procurement and
transplantation system, dedicated organ donation coordinators and
transplant teams within hospitals, and presumed consent
legislation.
The Organizacion Nacional de Trasplantes (or
National Organisation for Transplants-ONT) coordinates organ
donation and transplantation activities in Spain. This agency
maintains waiting lists, registries, compiles statistics and
operates training programs for medical professionals. Within each
major hospital specific organ transplant units operate on-call
under the direction of designated organ transplant coordinators.
Coordinators who are preferably physicians work within an intensive
care unit and are responsible for recognising potential donors,
providing information and counselling to families, and for the
organ retrieval process. Regional coordination centres support
activities in smaller hospitals. Coordination teams work apart from
the surgeons who are actually involved in the process of
transplantation, and are therefore focussed on identifying
potential donors and on supporting the families of the
deceased.[40]
Transplant law in Spain operates under a
presumed consent, or opt-out system. However, families must be
approached and sign an authorisation in order for the procedure to
take place. Presumed consent was introduced in Spain in 1979 but it
was not until 1989 when the ONT was established and a comprehensive
government effort made that organ donation rates began to rise. In
1989, the donation rate in Spain was 14.3 dpmp. This rate rose
steadily over a ten year period and has remained close to the
current rate of 34.3 dpmp since. Key contributory factors to the
rise in the number of donors in this period were the establishment
of national coordinating efforts, a change in donor profiles, with
those over the age of 60 coming to represent more than a third of
donors, improved identification of potential donors and specific
funding for organ donation and transplantation activities in
hospitals.[41]
The Spanish national health system comprises
all facilities and public services devoted to health, with public
health care available for almost the entire population.[42] Organ transplantation
has a specific budget allocation which pays for: the organ
procurement network, the salaries of coordinators and retrieval
teams whilst involved in transplantation activities, any tests to
determine donor suitability, ICU bed costs, and training and
education programs. The reimbursement by national and regional
authorities of hospital costs related to the transplantation
process is seen as being of key importance in sustaining the
involvement of smaller hospitals in the organ donation
process.[43]
The National Clinical
Taskforce on Organ and Tissue Donation was established by the then
Minister for Health and Ageing, Tony Abbott, in October 2006. The
Taskforce was charged with providing evidence-based advice to the
Government on ways to improve the rate of safe, effective and
ethical organ, eye and tissue donation for transplantation in
Australia .[44]
This advice was to be considered by all Australian governments
under the framework of the [10 point] National Reform Agenda on
Organ and Tissue Donation, agreed to by all state Health Ministers
in July 2006 .[45]
The Taskforce, which
comprised key stakeholders in the organ, eye and tissue sector,
provided an early report to Abbott in December 2006, outlining its
intended working approach and key policy directions. It
subsequently submitted a mid-term report in June 2007, and its
final report in January 2008.[46] Upon the submission of its final report, the
Taskforce was disbanded, with the 51 recommendations and six
critical areas for action identified in the report to set the
direction or road map for reform of the sector.
In terms of the most
frequently used national performance measure for organ donation,
the donor rate per million population (dpmp), at 10 dpmp, Australia
performs poorly in relation to comparable industrialised
nations.[47] While
there are methodological problems related to the dpmp measure and
comparisons based upon it, as noted above, it is nevertheless clear
that Australia is under-performing where it comes to organ and
tissue donation. Australia is unable to meet existing demand for
organ transplantation and this situation is expected to deteriorate
in the future as the ageing of the population and increased
incidence of lifestyle diseases such as obesity and Type 2 diabetes
lead to further increases in demand for donated organs. Even if
Australia were to meet the performance goal of 15 organ donors per
million population (a 50 per cent increase above trends over the
past 10 years), as recommended by the Taskforce, this would only
provide organs for up to an additional 370 patients a year.[48] This figure is well
short of existing not to mention anticipated demand.
To make matters
worse, despite a long list of reports, reviews and organisations
that have been created in an attempt to increase the nation s organ
donation rate over time, no significant inroads have yet been
made.[49]
The Taskforce
attributed Australia s inability to increase organ donation rates
to a number of factors, chief of which was the fragmented nature of
the organ donation and transplantation sector.
As noted above,
unlike other comparable nations, Australia does not have a national
organ donor coordination network or single coordinating agency.
Instead, the system is state- and territory-based, with each
jurisdiction operating under its own organ and tissue
donation-related legislation, procedures and practices. Indeed, not
only is there variation between jurisdictions, but also within
them, with individual hospitals and clinics operating according to
their own different practices.[50] In short, the sector is characterised by
fragmentation and a lack of effective coordination and cohesion.
This was viewed by the Taskforce as posing a major impediment to
increasing rates of donation and transplantation. A majority of the
report s recommendations, which are effectively summarised under
six critical areas for action, are oriented towards addressing
these structural impediments.
Essentially, the
Taskforce highlighted the need for national coordination of all
major aspects of Australia s organ donation and transplantation
system. These aspects include: communications with the public about
donation, clinical triggers and notification protocols to identify
potential donors, waiting list criteria and organ allocation
protocols and data collection and dissemination on Australia s
organ donation and transplantation performance. It proposed the
establishment of a national donation and transplantation authority,
comprising clinicians and governments, to coordinate on a national
basis the above activities and any future organ donation-related
reforms.
This proposed
approach would represent a significant departure from and
improvement over existing arrangements. If the recommendation to
establish a National Authority were to be taken up through the
passing of the Australian Organ and Tissue Donation and
Transplantation Authority Bill 2008, this could be the first step
on the road to bringing Australia s system into closer alignment
with Spain s highly successful nationally coordinated system. While
specific aspects of Australia s system have in the past been
conducted on a national basis such as awareness raising and
programs for increasing donation rates under Australians Donate
these have not, on the whole, been successful. This is undoubtedly
because they were not part of a broader and more consistent program
of national coordination.
It is worth noting
that the proposed Australian Organ and Tissue Donation and
Transplantation Authority is a statutory agency with no legislative
power. While the Authority could require compliance with a policy
or protocol, standard or code of practice (as determined by the
Authority) as a term or condition of financial assistance, it could
not compel the states and territories to comply. As a result, were
any of the states or territories to choose to introduce an opt-out
system as some have indicated they are considering they would be
free to do so.[51]
Implementation of the Taskforce s
recommendations, with their emphasis on national coordination,
would be likely to have a positive impact on both organ donation
and transplantation rates. As noted above, nationally coordinated
arrangements especially in the hospital setting can help to improve
rates of actual donors.[52] Nevertheless, it is unlikely that these changes alone
would be sufficient to solve Australia s current much less future
organ deficit.
The Taskforce was asked to provide the
government with advice across the complete spectrum of donation and
transplantation. However, an unstated principle underpinning the
Taskforce s activity and eventual recommendations was that there
was to be a continued reliance on voluntary donors. Moreover,
would-be donors were not to be compelled or pressured in any way to
make a decision about whether or not they would donate their
organs. As a result, the Taskforce could not be said to have
addressed all of the relevant issues.
For example, the Taskforce rejected the
introduction of an opt-out, or presumed consent system such as that
implemented in Spain, and being considered by some of the states as
a potential solution to Australia s low donor rate. It did so on
the grounds that when international comparisons in donor rates
according to consent laws (and actual practice) are considered,
there is no clear correlation between opt-out systems and better
performance in organ donation .[53] However, a recent study of opt-in and opt-out
systems, conducted over a ten-year period for 22 countries,
indicates otherwise. This study concluded that, when other
determinant factors affecting donor numbers were accounted for,
those countries with opt-out legislation in place had deceased
organ donor rates that were 25 to 30 per cent higher than those
with opt-in legislation.[54]
In rejecting an opt-out system, the Taskforce
also cited the possibility that the introduction of such a system
could exacerbate the pre-existing element of medical mistrust
within the Australian community as a reason for its recommending
that no Australian state or territory introduce an opt-out
system.[55] The
Taskforce went on to express the view that a presumed consent
system may feed these fears and most likely lead to an increase in
the proportion of registrations of objections to donation .[56] While the Taskforce
claimed that surveys have indicated this level of mistrust, no
citations to these surveys were provided. Nor did the Taskforce
furnish any other supporting evidence.
In summing up its consideration of the
presumed consent option, the Taskforce argued that when Australia s
predominant social attitudes and legal traditions are considered,
the current system better balances individual rights with the
community s need for organ, eye and tissue donation. It is
debatable whether or not the current system does indeed better
balance individual rights with the need for donation, especially
with respect to the arrangements that allow the next-of-kin to
overrule a deceased person s decision to donate their organs. This
point will be considered in some detail in the course of discussion
below.
However, for the moment it is worth noting
that the Australian Law Reform Commission (ALRC) has argued that,
once the social value of tissue donation in Australia is clear,
there would be nothing undesirable in [moving toward an opt-out
system] because there is little potential for conflict of interest
between the community and the individual on this subject .[57] The ALRC was
supportive of the introduction of an opt-out system as a means to
increase the supply of human tissue for transplantation and other
purposes, and viewed the introduction of such a system as being
simply a matter of time. As the Commission saw it:
It would seem paradoxically, that the more the
public accepts the desirability of giving human tissue the more it
will tolerate the creation of exceptions to consensual donation,
and the closer it will move to a position of contracting out [or,
an opt-out system] The question is one of changing outlook and of
growing acceptance of the use of dead bodies for the relief of
suffering of the living. If there develops a community attitude
that tissues from dead bodies may be so used, instead of being
cremated or interred intact, and that such use is a better
demonstration of support for human dignity, people may see [an
opt-out system] as an improvement on the present.[58]
In addition to its firm commitment to the
maintenance of Australia s existing opt-in arrangements, the
Taskforce also sought to preserve the current system s basis in
altruism and egalitarianism and its next-of-kin arrangements. The
possibility of introducing payment or any other form of
consideration for organ donation was certainly off the agenda.
In a number of important respects, the
Taskforce s deliberations were based within the parameters of what
may be described as a gift of life doctrine. The main features of
this doctrine are described in the following section.
The gift of life describes the voluntary
donation of blood or organs in which an altruistic individual
donates blood, an organ or organs to an anonymous recipient or
recipients without expectation of financial or other reward. In
theory, where the gift is concerned:
there is no formal contract, no legal bond, no
situation of power, domination, constraint or compulsion, no sense
of shame or guilt, no gratitude imperative, no need for penitence,
no money and no explicit guarantee of or wish for a reward or
return gift. They are acts of free will; of the exercise of choice;
of conscience without shame.[59]
Thus, the gift may be contrasted with the
buying and selling of blood or organs, wherein blood and/or organs
are treated as a commodity to be bought and sold in the
marketplace.
Perhaps the staunchest and most influential
advocate of the gift (in relation to blood) was British sociologist
Richard Titmuss.[60] In the late 1960s Titmuss conducted a comparative study
of the blood transfusion and donor systems of various countries
and, in particular, those of Britain and the United States (US).
While in Britain all blood was provided by voluntary, unpaid
donors, in the US, at that time, a significant proportion of the
nation s blood supply came from paid donors. This situation
provided Titmuss with a base from which to compare the merits of
voluntary, unpaid donation over paid donation.
Titmuss found that there were higher rates of
hepatitis in recipients of blood who received blood sourced from
paid donors and lower rates among recipients who received blood
sourced from voluntary, unpaid donors. This he attributed to
voluntary donors altruistic motivation, which, he argued, meant
that it was less likely that they would donate blood that was
diseased and that would harm the recipient.
Titmuss research indicated that paid donors
were more likely to be poor and unhealthy and, driven by the need
for money, to lie about their health status. Largely as a result of
their transient and uncertain circumstances, paid donors were also
less likely to be regular contributors. This meant that their
health status could not be checked regularly over time and resulted
both in an increased risk to the blood supply and an inconsistent
supply of blood. This inconsistency in blood supply led to US
hospitals frequently running short of blood and to more blood being
wasted than in Britain.
In sum, the reliance upon paid donors was
found to pose risks to the health and well-being of blood
recipients, as well as to result in a less efficient system.
Based on these findings, and on the unique
attributes of blood, Titmuss stressed the considered importance of
promoting altruism in blood donation. He argued that altruism in
blood donation contributes to the ties that bind a society, both
through the development of social solidarity between citizens and
by providing evidence of the social contract around which a
particular society is organised. Because British donors gave their
blood without the expectation that they would receive any reward
even a future blood transfusion for themselves or their family, as
this could not be guaranteed Titmuss held that they were signifying
their belief in the willingness of others to act altruistically in
the future. They were expressing their confidence in the behaviour
of future unknown strangers and thus, their faith in the moral
sense of their fellows. In effect, for Titmuss, voluntary blood
donation was held to reflect important ethical and socio-cultural
norms.
It should be noted that in Titmuss thesis, a
clear line is drawn between society and the market. Markets are
represented as arenas in which the exchange of goods and services
takes place in an impersonal, self-interested and amoral manner,
with the ultimate goal that of profit maximisation. This is
contrasted with voluntary blood donation systems that are
characterised by the moral nature of their transactions, which
bring about and maintain personal relationships between individuals
and groups .[61]
Titmuss was especially clear and emphatic
where it came to the considered social importance of the gift and
necessity of ensuring that blood should not be treated as a
commercial commodity. As he saw it, a voluntary system based on the
gift brings out the best in people; it fosters the individual
expression of altruism and regard for the needs of others .[62] In doing so, Titmuss
argued, the gift, as well as being ethical, helped to ensure the
safety and efficacy of Britain s voluntary, unpaid blood donation
system (see above).
Titmuss work has been hugely influential. On
its original publication in 1970 The Gift Relationship
provoked substantial debate regarding the relative qualities and
worth of voluntary unpaid and paid blood and organ donation
systems, a debate that continues to this day. It has also
contributed to the gift of life s having become the dominant
organising principle and doctrine for a majority of the world s
blood and organ donation systems. Blood and organ donation is
considered an altruistic act in most countries, with legislation in
these countries (including Australia) outlawing any material
benefit for donation.[63] Not only does the gift doctrine underpin these
countries legislation, but it also dominates in many countries
transplantation systems, education campaigns and campaigns to
promote donation.
In Australia s case, the gift of life doctrine
is clearly expressed in and underpins the principles that guide the
clinical sector and community awareness and education activities.
Information provided to the Australian community by the organ
donation sector, awareness campaigns, and clinical and ethical
guidelines make constant reference to the gift of life doctrine as
the basis for current practice. For example, the ANZICS guidelines,
Statement on Death and Organ Donation, state that current
practice is based on the donation of organs and tissues as being an
unconditional altruistic, non-commercial act .[64] The NHMRC guidelines, Organ
and Tissue Donation After Death, For Transplantation, adhere
to the same principle. They state that donation of organs and
tissues is an act of altruism and human solidarity that potentially
benefits those in medical need and society as a whole .[65] The AODR website
emphasises that organ donation is the greatest gift one human being
can give another the gift of life , and state-based agencies make
constant reference to the gift .[66]
Thus, voluntary blood and organ donation has
come to be viewed as a selfless and altruistic act, and one that
should not be compelled in any way. As such, the act has been
associated with strong moral connotations. This poses a number of
problems, as outlined below.
Organ donation is not necessarily an heroic
act; nor is it necessarily a moral act. People do not always or
entirely donate their organs for selfless or altruistic
reasons.[67]
For example, Siminoff and Chillag found that
families of deceased donors often regard organ donation as a way of
giving meaning to the death or of allowing the person to live on in
others.[68] In the
case of living organ donors, they found that these spouses and
siblings need not be acting primarily out of a sense of altruism,
but rather to experience the personal reward of seeing the
recipient s well-being restored.[69] Matas observes in a similar vein that where
living organ donation takes place, there is often a component of
family pressure or of secondary gain.[70]
The Institute of Medicine of the National
Academies argues that the motives of organ donors are no less
complex than those of regular gift givers. These, the Institute
contends, may reflect a combination of generosity, perceived
obligation, and a desire to be regarded with favour .[71] But it is not only
recent commentators who have questioned the notion that it is
primarily altruism that drives people to donate their organs, and
that underpins the gift. Indeed, Titmuss himself acknowledged that
blood donors give their blood for a variety of different
reasons:
No donor type can, of course, be said to be
characterised by complete, disinterested, spontaneous altruism.
There must be some sense of obligation, approval and interest; some
awareness of need and of the purposes of the blood gift; perhaps
some organised group rivalry in generosity; some knowledge that
fellow-members of the community who are young or old or sick cannot
donate, and some expectation and assurance that a return gift may
be needed and received at some future time.[72]
To donate , Titmuss notes, is to give implying
an altruistic motive .[73] Thus, based on his above observation, and the fact that
his study dealt with paid as well as unpaid blood donors, Titmuss
remarked that, strictly speaking, he should have used the term
suppliers rather than donors in the context of his survey.
All this is not to suggest that altruism plays
no role in people s decision whether or not to donate
their organs; clearly it does, to a greater or lesser degree. It
is, instead, to point out that it is mistaken on empirical grounds
to base a donation or gift system (entirely) in altruism and
morality. While flattering, such a position presents neither an
accurate nor a complete picture of the phenomenon the act
itself.
At the same time, a romanticised view of organ
donation and human nature, and an insistence on pure altruism and
voluntarism in donation also represents a poor starting point for
policy-making. Arguably, a far more realistic and effective
approach is to institute a system that accounts for the widest
possible range of motives for donation, while not compromising
people s ability to make ethical choices in donation. Much of the
logic behind such a policy approach has been clearly expressed by
London School of Economics economist, Julian Le Grand.
Julian Le Grand argues that the post-war
system of social security in the UK was based on certain
assumptions concerning human motivation and behaviour. Crudely
speaking, UK policy makers (Democratic Socialists, in the main)
constructed the welfare system based on the implicit assumption
that the state and its agents were, along with tax payers, selfless
altruists, or knights . Individuals in receipt of welfare benefits,
on the other hand, were assumed to be essentially passive
recipients of state largesse, or pawns .
All of these assumptions were subsequently
challenged, as it became increasingly apparent that welfare
recipients were not happy with the low variety and level of
services with which they were provided; that public officials and
professionals were, respectively, not necessarily operating in the
public interest or with only the welfare of their clients in mind;
and, that those paying for welfare were typically resistant to this
redistribution.[74]
Thus, according to Le Grand, welfare
recipients could not be said to have been pawns, or public
officials, professionals and taxpayers, knights. There were found
to be elements of the knight (selfless altruism) and knave
(self-interest) in each of these players and their actions.[75] To craft social
policies based on the assumption that individuals are more likely
to be self-interested than public-spirited or the other way around
is, therefore, Le Grand argues, to over-simply the situation. It is
difficult, if not impossible, to determine in most instances
whether people will behave as knights, knaves or indeed in some
more complex fashion .[76]
In such a situation of ignorance concerning
human motivation, and bearing in mind that grounding social policy
on a knight-, knave- or pawn-based strategy could have disastrous
results (turning knights into knaves, for example), Le Grand
advocates the adoption of what he terms robust strategies :
strategies or institutions that are robust to whatever assumption
is made about human motivation .[77] Such strategies or institutions could appeal to
both the knight and the knave to self-interest and to the
collectivist spirit of altruism.
Consistent with this argument, and with the
evidence outlined above, organ donors and potential donors should
not be viewed simply as altruistic and selfless knights. Nor should
they simply be understood as knaves as calculating or economic
agents who donate, or who would donate, largely out of
self-interest. Rather, in policy terms, arguably it is best to
hedge one s bets and conceive of donors and potential donors as
knights and knaves to posit the coexistence of social
commitment and self-interest. Instead of being understood and
treated primarily as selfless altruists, as is the case under
current arrangements, donors and would-be donors would need to be
understood and treated in neutral terms where it comes to their
motivation and behaviour; they would need to be treated, first and
foremost, as rational, autonomous decision-makers.
This would be to recognise that many organ
donors donate their organs simply because they have thought about
it and consider it a sensible and necessary thing to do.[78] These donors
appreciate the act as being a responsibility, and as a matter that
concerns many of us. Such a move would also be to bring Australia s
organ donation system in line with most of the nation s other
public institutions including citizenship which are premised on the
assumption of a rational, autonomous decision-maker.[79]
It should be noted that treating people as
rational, autonomous decision-makers need not necessarily mean that
they are acting as such in the context of organ donation. Personal
beliefs mystical thinking, ancient fears and non-rational responses
figure more or less prominently in people s decisions about whether
or not to donate their organs, or to allow their relatives to
donate.[80] Indeed,
many people are aware that they are making a non-rational decision
about organ donation, and explicitly acknowledge this.[81] Similarly, public
education to overcome perceived deficits of knowledge need not
necessarily result in increased organ donation rates, as personal
beliefs may be relatively impervious to attempts to shift them.
Nevertheless, it is necessary to treat people
as rational, autonomous decision-makers. Perhaps the most important
reason for doing so is that this encourages people to behave as
active and responsible citizens. This is a generic good and one
that is independent of specific policy considerations, such as how
to increase rates of organ donation. With regard to organ donation,
people need to be treated as rational, autonomous decision-makers:
firstly, for the reasons discussed above and throughout the
remainder of this paper; secondly, because there is evidence that
personal beliefs can be counterbalanced by rational arguments and
the presentation of factual information; and, thirdly, because the
provision of factual information and the full range of relevant
issues is necessary to ensure informed consent on the part of
donors.[82]
Thinking about the act of organ donation in
such terms is not only a more accurate rendering of the situation,
but also one that would be likely to increase rates of organ
donation in the long-term, through appropriate institutional and
cultural change. At the very least, it would result in more
meaningful and productive policy debates.
Re-casting organ donation to view the act of
donation as one of rational utilitarianism rather than of selfless
altruism would have a number of implications for Australia s organ
donation system as it currently stands. These implications are
briefly discussed below.
As noted above, the National Clinical
Taskforce on Organ and Tissue Donation argued in its report that
Australia s opt-in system is fairer and gives people more of a
choice than does the alternative opt-out or presumed consent
system. This position has parallels with the notion that people
should not be forced into making moral decisions, a notion that is
central to the gift doctrine. Rather, they should arrive at
decisions such as whether or not they wish to donate their organs
in an entirely un-coerced manner. Under a system dominated by the
gift doctrine, their assumed altruism must not be compromised.
However, where the would-be donor is assumed
to be a rational, autonomous decision-maker, and the act of
donation viewed as being not necessarily a moral one, there is no
real impediment to obliging people to make such decisions.[83] This is especially so
given that Australians express almost universal support for the
concept of organ donation.[84] People could still refuse to donate their organs for
whatever reason, or reverse their commitment to donate their organs
at any point.[85]
Nor would they be required to justify their decision. The point is
that they would need to think about the question of organ donation,
and to make a commitment, one way or the other.[86] They still have control over the
decision, the only difference being that they are obliged to make
one. This requirement is not unlike a number of other obligations
currently placed upon Australian citizens. It is merely a matter of
reciprocal or mutual obligation for people who may in the future
need to draw on the pool of available organs.
Treating organ donors as rational, autonomous
decision-makers would be to empower them (and recipients) in
several important ways.
Firstly, all organ donation
system-related processes, including those associated with equity of
access and fairness in the allocation of organs would need to be
made genuinely transparent. This would be a necessary prerequisite
in order for people to give their informed consent to donate under
an opt-out system, rather than a focus on appeals to people s
altruism, as is currently the case. At present, the emphasis is
placed on education and awareness campaigns to increase knowledge
of and support for organ donation in Australia. But this is not the
same thing as providing information on and engaging potential
donors in all aspects of donation and allocation processes.
It should be noted that much of the lack of
transparency evident in Australia s current transplant sector is a
result of variations in the processes used for different organs as
well as differences between the states and territories. The
Taskforce has recognised this problem and acknowledges the need for
increased transparency, as well as for the need to involve
consumers and the wider community in the policy development process
around organ allocation.[87] That this consumer and community involvement should be
based on an informed understanding of the relevant issues, rather
than simply through polling results (in which there is no guarantee
that respondents have such an informed understanding), is also
acknowledged by the Taskforce.[88]
The Taskforce has recommended the development
of national waiting list criteria and allocation protocols,
algorithms and processes. It has indicated that these must be seen
to be transparent, equitable and must appropriately address the
associated ethical, social and value concerns. While the Taskforce
has flagged the need for greater community involvement in the
consideration of such issues so as to better inform policy,
protocol and criteria development, it did not consider the
possibility of further donor involvement in the transplant sector.
More specifically, it did not consider the possibility of directed
donation for deceased organ donors as well as for living organ
donors. This would be to give donors themselves more of a say in
how and where their organs are used.
At present, only living organ donation can be
directed as well as non-directed. Where directed donation occurs, a
donor agrees to donate to an identified recipient, usually a
relative or friend.[89] The living donor is also able to make an altruistic
non-directed donation and, in this instance, the donor donates to
any suitable person on the waiting list.[90]
The question is, why is the option of directed
organ donation not made available to deceased organ donors? The
Taskforce notes that the allocation of organs is a complex process
that entails the consideration of factors such as medical need,
urgency and capacity to benefit.[91] Clearly, ultimate decisions on the allocation of
organs, such as these, must be the preserve of those surgeons,
physicians, organ donation committees and advisory groups who are
directly involved in the transplant process.[92] That said, while these decisions must
take priority, there is still scope in theory at least for donors
to indicate their preferences with regard to the allocation of
their organs, and for these preferences to be considered. It should
be noted that were conditions to be applied to organ donation, this
could potentially lead to wastage of organs and increased
administrative complexity. Nevertheless, this possibility should
not discount consideration of the option.
The problem with the directed organ donation
option, of course, is that it introduces the possibility that
donors could exercise discrimination in their choice of to whom
their organ or organs should be allocated. In the worst case
scenario, such an option would allow people to give vent to their
biases and personal preferences at the expense of certain groups
and individuals.[93]
To illustrate, given that donated organs are a
scarce community resource, a healthy-living organ donor may object
to their organs being allocated to somebody who is affected by
lifestyle diseases , rather than to somebody who is viewed as being
in need of a transplant through no fault of their own. The
hypothetical donor may reason that to donate an organ to somebody
who leads a less-than-healthy lifestyle would be to waste a
precious resource.[94] On these grounds, such a donor might request that, if
their organs were to be allocated to a recipient suffering from
lifestyle diseases, this would be on the precondition that the
recipient agreed to make healthier lifestyle choices in the
future.[95]
Alternatively, deceased donors could indicate
that they are happy for their organs to be allocated on an entirely
non-directed basis, as is currently the case.
According to the gift doctrine, donors give
their organs in a selfless, altruistic and egalitarian manner.
Thus, there can be no prescribed and specified discrimination in
the destination of the gift .[96] The moral decision is to give to strangers. In
the case of Britain s blood donor system, Titmuss argued that by
not doing something by not giving donors a right to prescribe the
group characteristics of recipients the [National Blood Transfusion
and National Health Services] thus presume an unspoken shared
belief in the universality of need .[97] As Titmuss saw it, his own case study
provided some vindication for this policy position. Because he
found that donors shared a sense of social responsibility towards
the needs of other members of society, Titmuss argued that, by
implication, this demonstrated their commitment to the provision of
services on the basis of common human needs, that is, on an
indiscriminate basis.
There are a number of problems with Titmuss
argument and with the gift in relation to the question of directed
and non-directed donation. However, for the purposes of this paper
the main problem is that it assumes that the decision to donate one
s organs is necessarily and must be a moral decision, and
one that must be made on an altruistic and egalitarian basis. This
is primarily because, from the perspective of the gift, a donation
system is assumed to actualise the social and moral potentialities
of all citizens (in effect, it helps to create knights).[98]
The key point is that an organ donation system
does not necessarily need to enable the altruistic and egalitarian
capacities of would be donors through prescribing alternative forms
of human motivation or decision-making in donation. As the system
currently stands, a deceased donor has the choice of donating their
organs on an altruistic and egalitarian basis, or not donating at
all.[99] In the
terms of Le Grand s analogy, outlined above, the system allows only
for knights and for a particular form of knave one that is not
necessarily self-interested, but who need not subscribe to the
indiscriminate egalitarianism that underpins the system.
If one assumes a donor who is a rational,
autonomous decision-maker, one who may or may not choose to direct
their organs (or, act as a knight or knave), but who is given the
possibility of doing so, then this allows for the widest possible
range of motivations and choices. It does not preclude people from
making moral decisions (however interpreted) in organ donation.
Indeed, it might be argued that the introduction of the possibility
of directed as well as non-directed deceased organ donation could
increase people s scope and ability to make truly moral
decisions.
That said, Australians may choose not to allow
directed donation as an expression of their shared commitment to
the universality of need, and as recommended by Titmuss, above.
They already prohibit certain other forms of behaviour as an
expression of shared values, such as constraining private health
insurers from discriminating against unhealthy or older members or
not allowing states to charge wealthy patients for using public
hospitals. The point is that, because we cannot assume that people
are knights, the possibility of directed donation needs to be at
least considered.
The explicit assumption of a rational,
autonomous decision-maker as the basis for future organ donation
policy in Australia would if taken seriously demand the revision of
existing arrangements where it comes to next-of-kin s ability to
overrule a deceased person s decision to donate their organs.
Australia s current system of organ donation
largely relies on consent from family or next-of-kin for the
donation of a deceased person s organs. Although a deceased donor
may have registered their consent to donate their organs via the
Australian Organ Donor Register (AODR), or through written means
both forms of registration that are considered to be legally
binding and that may be acted upon in practice, clinicians always
seek the approval of next-of-kin for the donation. In this manner,
the deceased person s wishes may be overridden.
A Newspoll conducted in 2004 indicated that
almost three quarters of Australians (73 per cent) believe that a
person s decision to donate their organs should be legally binding.
These respondents also believed that the law should be changed to
ensure that a deceased person s next-of-kin cannot overrule the
decision.[100] Of
these seventy-three per cent, fifty-six per cent were strongly in
favour of such a change. These results are borne out by research
conducted by Novartis Pharmaceuticals in 1999, Stollznow Research
in 2004 and Australians Donate in 2004. Respectively, these
national surveys found that 74, 87 and 73 per cent of respondents
did not believe that a person s next-of-kin should be able to
overturn their decision to become a donor after death.
Despite this consistent and overwhelming
support for donors wishes being upheld where it comes to their
decision to donate, the Taskforce did not question the current
arrangement. Indeed, the Taskforce recommended that any promotional
AODR material should emphasise that next-of-kin views are always
taken into account when donation is being considered .[101] This stance is
somewhat ironic given the Taskforce s emphasis in various other
sections of the report on the need to balance individual rights
with the community s need for donation.
Given that the refusal rates of families in
Australia are higher than those in other countries, the current
next-of-kin arrangements pose a substantial problem not just in
terms of donor s rights, but also in terms of increasing the number
of donor organs available for transplant.[102]
The introduction of a system of payment for
organs in Australia would be a radical policy option, and one with
which many Australians would be likely to be uncomfortable. Few
countries allow the sale and purchase of organs and such an option
would represent a last resort to most people. Nevertheless, the
shortage of organs in the rest of the international community has
led many commentators to begin seriously considering this
alternative. While introducing financial incentives for organ
donation is antithetical to the way that we currently do things in
Australia, it is something that may need to be seriously considered
in the future, if other options for increasing the supply of organs
available for transplantation fail to yield results.
Humans are not, as Titmuss observes, born
altruistic or self interested: they learn to give, or not
to give. Thus, an important consideration in the realm of public
policy is the extent to which specific instruments of public policy
encourage or discourage, foster or destroy the individual
expression of altruism and regard for the needs of others .[103] It is crucial, as
noted above, that knights or potential knights should not be turned
into knaves as a result of flawed or poorly designed public
policy.
Titmuss main argument in support of the gift
in the context of blood donation was that voluntary blood donation
systems foster giving to unnamed strangers. As such, voluntary
systems were held by him to facilitate the expression of people s
moral sense. Markets, on the other hand, were portrayed by Titmuss
as promoting possessive egoism. If human blood was to be morally
sanctioned as something to be bought and sold, Titmuss argued that
each individual would act egoistically for the good of all by
selling his blood for what the market would pay .[104] In effect, Titmuss argument is
that if people are permitted by society to sell their
blood (or organs), then this effectively takes away their
ability to behave altruistically and to exercise moral
choice. The ultimate and logical consequence of blood being treated
as a consumption good, as Titmuss saw it, would be that all policy
would become economic policy, with the only values that count being
those that could be measured in terms of money.
Titmuss argument can be seen as flawed on two
main grounds: firstly, it draws a crude and unrealistic dichotomy
between the market and society and, secondly, it paints altogether
too dim a view of markets and of people s capacity and willingness
to act in a moral and rational fashion in market societies.
Titmuss defence of the gift in relation to
blood donation is very much a product of the historical moment and
social and political context in which it was written. It has, to an
extent, been overtaken and undermined by subsequent developments as
a result. As noted above, the post-war system of social security in
the UK was largely premised on various assumptions concerning human
motivation and behaviour. It was on the basis of these assumptions
that a clear line was drawn between individualistic private markets
and social services in the development of welfare
institutions.[105] Since then our understandings concerning human
motivation and behaviour have become more complex, and we have seen
the development of private markets in health, education and
employment services, among other areas. Few people would now argue,
as did Titmuss, that private markets cannot coexist with
redistributive social welfare institutions and processes without
inevitably corrupting these institutions and processes, along with
people s altruism and regard for the needs of others.[106]
As noted above, Titmuss argument is that if
people are to be able to act altruistically in giving
their blood, then this demands that they should not be given the
option of selling their blood. But making available the option of
selling one s blood or organs does not entail curtailing the moral
choice of giving to strangers.[107] This would only be the case if the option of
altruistically donating one s organs were outlawed altogether, with
the sale of one s organs rendered the only available option. It
should also be noted that giving to strangers is not the only moral
choice available. To suggest that this is so would be to subscribe
uncritically to the gift doctrine and to the notion that the act of
donation is pure, selfless and altruistic. The decision to become a
paid donor can still be understood as a charitable act.[108] People do not
have to become a donor, either paid or unpaid. That said,
some people are freer than others where it comes to making such
decisions. This issue is considered below.
Titmuss other key argument in support of the
gift in the context of blood donation was that blood sourced from
voluntary, unpaid donation was safer than that sourced through paid
donation. Since the 1960s, when Titmuss research was conducted,
stricter donor-screening protocols, more sophisticated testing and
viral inactivation methods have been developed and
introduced.[109]
These new protocols and methods ensure that blood products sourced
from paid donors are as safe as those sourced from voluntary,
unpaid donors .[110] The same holds for organs.
Rethinking organ donation so as to adopt as a
starting point a rational, autonomous decision-maker does not lead
inexorably to the introduction of a system of payment for organs;
it does, however, demand serious consideration of the option. This
is because to treat people as rational, autonomous decision-makers
would be to truly give them control of their own bodies. The
question of whether or not they would then be allowed to sell parts
of their bodies is a secondary one, and one that is for society as
a whole, and not simply lawyers, doctors and hospitals, to debate
and resolve.[111]
The question of whether or not payment for organs was likely to
increase the number of organs available for transplantation is also
not a primary consideration.
That said, the introduction of a system of
payment for organs is something that most Australians would
probably have some difficulty in accepting, and would only be
likely to seriously consider when all other avenues to increase the
number of available organs had been exhausted.
At present, the fundamental tenet of liberal
philosophy that prioritises individual autonomy is not supported by
the law. Individuals are denied property in their own bodies and
body parts.[112]
Thus, while people are allowed to give their organs (but only under
the restrictive conditions outlined above) they are not allowed to
sell or otherwise trade their body parts. Nor are they allowed to
purchase body parts in Australia, at least.[113]
An increasing number of commentators argue
that laws specifically prohibiting the sale of organs should be
repealed and that legislation that recognises the right of
individuals to buy, sell and otherwise trade their body parts
should be introduced.[114] For the most part they do so on the grounds that
introducing a system of payment for organs could significantly
increase the number of organs available for transplant.[115] Were this the case,
the number of people suffering and dying whilst waiting for an
organ transplant could be reduced, along with hospital and other
health care-related funding and resources.
The sale of organs raises a number of issues.
However, arguably the main issue has to do with the question of
equity and with the related possibility of exploitation. This was
certainly the issue of most concern to Titmuss. Objections to the
sale of organs on the grounds of equity have it that the essentials
of life, including medical care, should be available to all members
of society, regardless of their ability or willingness to pay.
According to these arguments, were the sale of organs to be
permitted, this would discriminate unfairly in favour of wealthier
patients who are able to purchase organs that poor people cannot
afford. Not only would the introduction of a system of payment for
organs discriminate unfairly in favour of wealthier patients where
the purchase of organs is concerned, but such a system would also,
it is argued, lead to the poor being exploited for their body
parts. On this view, were the opportunity to sell their organs made
available to poor people, then they would be likely to do so as a
solution to their parlous circumstances.[116]
The argument against the sale of organs on the
principle of equity is difficult to sustain under current
conditions. Discrimination on the basis of people s ability to pay
is already firmly entrenched in Australian society and in such
areas of basic need as medical care and education. Thus, if organ
sale is wrong on the grounds of people s varying capacity to pay
for necessary organs, then arguably all benefits available to the
rich, including all private medicine , are wrong.[117] Indeed, some commentators
maintain that to not allow poor people the option of selling their
organs is to deprive them of one possible means of achieving a
better life (along with, of course, the recipients of these
organs).[118] In
any case, problems such as those described above are not
insurmountable and, as far as some commentators are concerned,
should not serve as a justification for prohibition of the sale of
organs.
Were a system of payment for organs to be
introduced, equity could be assured through regulation of the
market to guarantee that transplantable organs were allocated on
the basis of need and urgency, as is currently the case. This would
circumvent the possibility of wealthy patients jumping the queue by
outbidding poorer patients. In addition, poorer patients could draw
on public assistance (such as Medicare) to enable them to afford
required organs.
A possible means of dealing with the potential
problem of poor people being exploited for their organs would be to
only permit deceased donation market transactions. Limiting market
transactions to deceased donations (where these organs were
sufficiently healthy for transplantation purposes) would ensure
that there was no acquisition of organs from live donors, and
therefore no exploitation of the poor (with respect to their organs
while they are alive, at least). Payment for organs would be made
to the relatives or nominated recipient of the organ donor.[119]
Such an option raises two related issues.
Insistence on a system of payment for deceased people s organs
alone would be to pose limits on the autonomy and self-ownership
that would be a necessary prerequisite for any form of organ sale.
If property were to be recognised in the human body then this
would, in principle, allow people to sell their organs while they
were alive and not just when deceased. Further, such a system would
not directly benefit the poor donor.
However, few people would countenance either
leaving organ donation entirely to market forces or allowing people
absolute freedom in the sale of their own organs. There would
clearly be a role for state intervention to ensure that any organ
market was regulated in the public interest, and that individuals
especially poor people were prevented from exploitation and harm.
In keeping with this principle, prohibiting people s sale of their
organs while alive might (or might not) be justifiable on health
grounds. The extent of the state s role in regulating a system of
payment for organs for example the question of whether or not the
state would be responsible for the purchase and sale of organs or
simply for setting and enforcing prices is something that would
need to be determined in the event that such an option were to be
considered.
It is widely recognised that Australia s organ
donation and transplantation sector is in need of significant
reform, if the nation s present and future need for organs is to be
met.
However, so long as proposed reforms do not,
for whatever reason, depart from the terms of a gift of life
doctrine, policy debates over organ donation will be constrained
and many possibilities for increasing organ donation and
transplantation rates go unexplored.
It is important to place organ donation into
its proper perspective. Without wishing to underplay the merit of
the act of organ donation, it is an act that should be viewed with
objectivity. Freeing debates and policy considerations from the
terms of the gift doctrine would serve to open up a broader debate
around organ donation. This would, in turn, enable serious
consideration of the presumed consent system option and the
possibility of a system of payment for organs should such an option
prove necessary. The consequence of such a debate could be more
realistic and innovative approaches to organ donation and,
ultimately, more saved Australian and New Zealand lives.
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