DOI: 10.12809/hkmj177022
© Hong Kong Academy of Medicine. CC BY-NC-ND 4.0
COMMENTARY
Opt-in or opt-out: that is not the question
RP Fan, PhD; HM Chan, PhD
Department of Public Policy, City University of
Hong Kong, Kowloon Tong, Hong Kong
Corresponding author: Dr RP Fan (safan@cityu.edu.hk)
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It has been reported that the Hong Kong SAR
Government has been considering opt-out legislation for organ donation. Dr
Wing-man Ko, former Secretary for Food and Health, believes that a more
active approach is needed.1 A
background information paper was offered by the Food and Health Bureau on
14 June 2017.2 Although the organ
donation rate in Hong Kong increased from 4.60 donors per million
population (pmp) in 1996 to 6.30 donors pmp in 2016, the figure remains
among the lowest in the world.3
According to international data in 2016, Spain has the highest donation
rate in the world (43.4 donors pmp), while Hong Kong’s figure represents
less than 20% of that rate.4
Hong Kong is now adopting the opt-in system, that
is, only those who have given explicit consent will be donors. Other
countries such as Spain and Singapore are adopting the opt-out system,
that is, anyone who has not clearly refused is presumed a donor. By
comparing the data of the opt-in and opt-out countries, some studies show
that opt-out consent leads to a relative increase in the total number of
organs transplanted,5 but the
findings are inconclusive. As Shepherd et al5
remarked, “it may be too simplistic to state that the introduction of
opt-out consent will increase deceased donation rates”. Based on a few
important considerations, we do not think it will be helpful to improve
Hong Kong’s donation rate by changing to an opt-out system.
First, although it is recognised that an opt-out
system is likely to bridge the gap between people’s intention and their
behaviour by removing the need to undertake any action in order to become
a donor,6 it is also recognised
that donation rates are multi-causal and that an opt-out strategy may not
actually help. For example, Spain’s opt-out consent legislation in 1979
did not have a positive influence on donation for 10 years. It has been
through crucial organisational changes (such as certain incentives offered
to its coordination networks and hospital coordinators) introduced since
1989 that have afforded Spain’s success.7
Second, in Hong Kong, a Centralised Organ Donation
Register (CODR) that allows prospective donors to register their wish of
donating organs after death through online registration or by email or fax
was set up by the Department of Health in 2008. The Register is also used
by the Organ Donation Coordinators of the Hospital Authority to contact
the families of deceased patients as potential donors.8 There are only nine Organ Donation Coordinators working
for seven clusters of 41 public hospitals.9
A heavy workload and insufficient manpower hinder the effectiveness of
donation coordination.10 As
Spain’s experience shows, introducing incentive measures and improving
existing supportive organisations are essential to the success of its
opt-out approach. In order words, legislation on opt-out consent alone is
not sufficient to boost organ donation.
Third, an opt-out system may also compromise
significant ethical values by failing to respect individual preferences or
personal autonomy.11 12 Importantly, most opt-out countries, such as Spain,
have adopted only a ‘soft’ approach, in which family members are able to
veto organ donation even if no formal objection has been expressed by the
deceased. As an influential British ethical council points out, the
importance attached to an individual’s wishes absolutely excludes any
consideration of introducing a ‘hard’ opt-out approach (in which organs
would automatically be taken regardless of the families’ views or wishes,
unless the deceased had explicitly objected during their lifetime) to
deceased organ donation, “given the impossibility of ensuring that
everyone would be sufficiently well-informed to have the opportunity of
opting out during their lifetime.”13
This is to say, changing to a ‘hard’ opt-out system would be unethical,
even for a western individualist society. The reason is that autonomous
individual action must be in line with an individual’s wishes and such
wishes must be based on adequate, rather than insufficient, incomplete, or
one-sided, information. Nonetheless, the British ethical council
recognises that it is simply impossible for everyone to be sufficiently
well-informed to opt out in a ‘hard’ opt-out system.13 Accordingly, many countries fall back on a ‘soft’
opt-out system to secure an individual’s own wishes by relying on the
family’s input so as to fully respect individual autonomy.
Fourth, the issue of public trust is engaged. In
the context of Hong Kong, a ‘hard’ opt-out strategy will inevitably create
a situation where donation coordinators and medical professionals are
conceived as intervening to ‘take’ organs rather than facilitating their
donation. Under these circumstances, public trust in the Hong Kong medical
system would be significantly compromised. We do not think it wise for
society to take this risk at the present time.
Finally, given that some studies have shown that
countries that adopt an opt-out approach can slightly increase the
donation rate and decrease the refusal rate of family members,14 should Hong Kong change to a ‘soft’ opt-out system?
This paper argues that this fallback does not work either. It has been the
norm in Hong Kong that immediate family members make any decision about
deceased organ donation if no wishes have been clearly expressed prior to
death. Accordingly, simply replacing our current family-based opt-in way
by a ‘soft’ opt-out system would not significantly change the result
because families will continue to make the final decision. Singapore has
experienced the effective force of its society’s ethical culture around
the issue. In 2008, the government revised the Human Organ Transplant Act
(HOTA) and clearly stated that “if the patient has not objected to organ
donation previously, in accordance to HOTA, the wishes of the patient to
donate his or her organ after death must be upheld.”15 Nonetheless in practice, organ retrieval from the
deceased in Singapore has still been carried out with appropriate concern
for the family’s wishes.2 Indeed,
international research has discovered that the next-of-kin has
considerable influence on the organ procurement process in both opt-in and
opt-out system nations.16 Changing
to a ‘soft’ opt-out system without successfully gaining the support of
Hong Kong families would not be very helpful. Just as Spain’s good outcome
was achieved primarily through organisational changes and incentive
provisions rather than through its opt-out strategy, it might be more
productive and ethically pertinent to improve Hong Kong’s organisational
factors and offer proper incentives to gain the support of both
individuals and their families for organ donation.
Some may argue that if an individual has registered
in the CODR his/her wish to donate organs, it is violating his/her
autonomy if the family veto that wish after his/her death. We think the
issue is more complicated than a simple confrontation between respecting
individual autonomy versus respecting the family. Autonomy is the capacity
not only to set one’s own goals to direct one’s action, but also to
refrain from acting on impulses one may experience if they are
incompatible with the goals one has adopted, especially when one has an
impulse without being sufficiently well-informed in the first place. The
individual may have merely wanted to indicate his/her preference and will
not be so minded to have it modified or even overridden by the decision of
other family members.17 In a
Confucian-influenced family-based culture like Hong Kong, one’s family
normally assists an individual’s capacity to exercise autonomy. A shared
decisional authority by both the individual and the family is normally
acknowledged and appreciated as embodying the naturalness and usefulness
of the engagement of immediate family members in a person’s biomedical
decisions to facilitate, rather than obstruct, that person’s autonomy.18 This is all the more reasonable since the CODR form
used in Hong Kong is very simple and fails to provide adequate information
and does not request details that are necessary for a truly valid
registration or informed consent. It should be recognised that there are
intractable practical difficulties to improving this procedure and making
it a sound, valid informed consent process that would exclude a family’s
right to veto: you would need special medical professionals to provide
information and answer questions to ensure that the potential donor
understands what he/she is consenting to, and under what circumstances and
by which death criteria (that are still controversial in the contemporary
world) he/she would donate organs. Given that this is highly improbable, a
family’s right to veto constitutes a reasonable means that largely
protects, rather than violates, the individual’s autonomy. Compared with
medical professionals or other relevant parties, the family is in a much
better position to decide whether the request made by the deceased is
still valid, whether it has been withdrawn, or is otherwise inconsistent
with the deceased’s long-standing life goals. This may be why the Hong
Kong Legislative Council rightly requires that “the family of the deceased
has to sign a consent form to confirm the organ or tissue to be removed
for transplant purpose.”19
Taking all these considerations into account, it is
more productive for us to research efficacious and defensible incentive
measures that will motivate both individuals and their families than to
introduce an opt-out strategy to optimise organ donation in Hong Kong. For
example, following Israel, both mainland China and Taiwan have recently
decided to incorporate legal conditions that will prioritise a donor’s
family members for organ distribution: deceased organ donors are honoured
and their relatives are given higher priority on any organ transplant
waiting list.20 Such incentives
are ethically fitting for Chinese family-based culture and should be
studied and adopted to promote organ donation in Hong Kong. Mandated
choice is another alternative. In some states of the United States,
drivers who wish to renew their licence are required to check a box
stating their preferences for organ donation. The renewal application will
not be accepted if they fail to comply. We believe that this is a timely
option to take as the Hong Kong SAR Government plans to introduce new Hong
Kong Identity Cards from 2018: citizens should be asked to indicate their
preferences for organ donation. Moreover, to facilitate communication,
respect shared authority and avoid conflict, they should also be required
to state if their preferences to donate are known and accepted by their
families so as to reduce later family refusal.
Acknowledgements
The authors would like to thank Mr CK Chui and Ms
Germaine Cheung for their assistance in the process of preparing and
submitting the paper.
Declaration
All authors have disclosed no conflicts of
interest.
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