Transplant International ISSN 0934-0874
REVIEW
Worldwide variability in deceased organ donation registries
Amanda M. Rosenblum,1 Alvin Ho-Ting Li,1 Leo Roels,2 Bryan Stewart,3,4 Versha Prakash,5
Janice Beitel,5 Kimberly Young,6 Sam Shemie,7 Peter Nickerson8 and Amit X. Garg1,9
1 Division of Nephrology, Department of Medicine, London Health Sciences Centre, London, Ontario, Canada
2 Donor Action Foundation, Linden, Belgium
3 OneLegacy, Los Angeles, CA, USA
4 Donate Life America Donor Designation Collaborative Faculty, Richmond, VA, USA
5 Trillium Gift of Life Network, Toronto, Ontario, Canada
6 Organs and Tissues, Canadian Blood Services, Edmonton, Alberta, Canada
7 Division of Pediatric Critical Care, Montreal Children’s Hospital, McGill University Health Centre, Montreal, Quebec, Canada
8 Department of Internal Medicine, University of Manitoba, Winnipeg, Manitoba, Canada
9 Department of Epidemiology and Biostatistics, University of Western Ontario, London, Ontario, Canada
Keywords
donation, donor identification, donor registry,
legal aspects, organ preservation &
procurement, organization.
Correspondence
Dr. Amit Garg, London Kidney Clinical
Research Unit, Room ELL-101, London Health
Sciences Centre, 800 Commissioners Road
East, London, Ontario N6A 4G5, Canada.
Tel.: 519-685-8502;
fax: 519-685-8072;
e-mail: amit.garg@lhsc.on.ca
Conflicts of Interest
The authors of this manuscript have no
conflicts of interest to disclose.
Re-use of this article is permitted in
accordance with the Terms and Conditions
set out at http://wileyonlinelibrary.com/online
open#OnlineOpen_Terms
Received: 1 February 2012
Revision requested: 23 February 2012
Accepted: 6 March 2012
Publlished online: 16 April 2012
Summary
The variability in deceased organ donation registries worldwide has received
little attention. We considered all operating registries, where individual wishes
about organ donation were recorded in a computerized database. We included
registries which recorded an individual’s decision to be a donor (donor registry), and registries which only recorded an individual’s objection (non-donor
registry). We collected information on 15 characteristics including history,
design, use and number of registrants for 27 registries (68%). Most registries
are nationally operated and government-owned. Registrations in five nations
expire and require renewal. Some registries provide the option to make specific
organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries,
except one, the proportion of adults (15+) registered is modest (<40%). These
proportions can be even lower when only affirmative decisions are considered.
One nation provides priority status on the transplant waiting list as an
incentive to affirmative registration, while another nation makes registering a
donation decision mandatory to obtain a driver’s license. Registered objections
in non-donor registries are rare (<0.5%). The variation in organ donor
registries worldwide necessitates public discourse and quality improvement
initiatives, to identify and support leading practices in registry use.
doi:10.1111/j.1432-2277.2012.01472.x
Introduction
Organ donation registries are computerized databases that
record member donation wishes. This is so a proper decision can be made on behalf of the deceased when the registry is checked by authorized personnel at the time of
death. There are two distinct types of registries, donor
and non-donor registries. Donor registries record an individual’s decision to be a deceased donor. They are also
used to promote organ donor awareness and evaluate
public campaigns [1–3]. This is important as transplantation improves survival, quality of life and is cost saving,
yet there is an inadequate number of organs available
for those in need [4–8]. Non-donor registries record an
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Transplant International ª 2012 European Society for Organ Transplantation 25 (2012) 801–811
801
Rosenblum et al.
Variability in deceased organ donation registries
individual’s objection to deceased donation. They are not
designed to promote deceased donation, but instead are a
legal tool for individuals to express their objection.
Whether donor registries effectively improve transplantation rates remains an open question. Nonetheless their
use continues to expand, supported by the American
Society of Transplantation and the public in many
nations [9–11]. Many characteristics of organ donation
registries differ between nations. Highlighting this variation is useful for public discourse and guides discussions
about leading practices amongst registry providers. We
conducted this review to address this information need.
Methods
Definitions
Our use of the term ‘donor’ registry refers to registries that
record either affirmative decisions only or both affirmative
decisions and objections. A ‘non-donor’ registry refers to registries that only record an objection to donation. The term
‘registries’ refers to both donor and non-donor registries.
In an explicit consent (opt in) system an individual
records their decision to become an organ donor in the
event of their death. They then become an organ donor if
their decision is registered in a donor registry or expressed
by family members at the time of death. Donor registries
can record legally binding ‘authorization’ or a non-binding expression of ‘intent’ by the deceased to donate. Some
donor registries only record affirmative decisions while
others record both affirmative decisions and objections.
Non-donor (or objection-only) registries are used only
in nations with presumed consent (opt-out) donation legislation [12]. In such a system, an individual opposed to
organ donation either registers their decision not to
donate in the event of their death, or expresses this decision to their family members. Otherwise, it is understood
the individual will become an organ donor. It is important to note that not all nations with presumed consent
use non-donor registries. Rather, some nations use registries that record both objections and affirmative decisions,
and some only record affirmative decisions.
Data of interest
We considered all nations with active deceased organ
donation programs. We collected information relevant to
the design and use of each registry including: implementation date, ownership, operation level (national or regional), minimum eligible age, expiration period of
registered decision (if applicable), registration options
(registration choices, ability to specify organs to include
and/or exclude), available methods of registration, priority status on transplant wait list, mandated choice, access802
ing the registry at the time of death (use in procurement
process, authorized person, method of access), legal status
of registered choices and registrant values (described
according to registration choice). To calculate the registration proportions we defined the adult population as
the total population 15 years of age and older using values from the Central Intelligence Agency World Factbook
estimated for July 2011 [13]. Fifteen and older was used
to create a base denominator among nations, in order to
facilitate comparisons. However since not all nations use
15 as a minimum age requirement, exact proportions of
the population registered will vary.
State and provincial registries operate in the USA and
Canada respectively. When making generalizations about
registry characteristics across these two nations, we
described what the majority of states and provinces did.
The only exception was for expirations; several states and
provinces have registrations that must be renewed, and
therefore warranted attention. For the total number of
registrants, we used unweighted averages for both the
USA and Canada. When providing registration information at the regional level, for American states the adult
population was defined as the total population 18 years
of age and older using values from the US Census Bureau
[14]. For Canadian provinces the adult population was
defined as the total population 15 years of age and older
using values from Statistics Canada [15]. Again, exact
proportions will vary for states and provinces where 18
and 15 are not used as a minimum age requirement.
Data collection
Data was collected from November 2010 until June 2011.
A single author (AMR) first determined if there was an
active registry by searching published literature and conducting Internet searches of ministries of health, nephrology and transplantation foundations’ websites. Relevant
data was abstracted by this same author (AMR) into
Excel 2007 (Microsoft, Redmond, Washington, DC,
USA). We sent our data to registry personnel for review
and to supplement any missing fields. A second independent reviewer (AL) then reviewed all the data for accuracy
including responses from nation representatives.
Results
Registries included in review
The Global Observatory on Donation and Transplantation
identifies 60 nations as having active deceased organ donation programs [16]. Lebanon is not identified as active,
but nation representatives confirmed they have a deceased
donation program and an active donor registry. Therefore
61 nations were considered eligible for review. We
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Transplant International ª 2012 European Society for Organ Transplantation 25 (2012) 801–811
Rosenblum et al.
determined that 20 nations do not have active deceased
donation registries, and all exclusions were confirmed by
nation representatives. We excluded one nation from our
study because of political unrest (Tunisia, non-donor
registry). Of the 40 nations left for consideration, registries
operating in 27 nations (68%) were included in the
review. For the remaining 13 nations, complete information was either unavailable or nation representatives were
unresponsive. This precluded knowledge of whether the 13
nations have active registries. A list of all 61 nations subdivided into included, excluded and unresponsive categories
is presented in Appendix S1.
Data tables
Characteristics of the registries included in this review are
presented in Table 1, separated into registries in nations
with explicit consent for deceased organ donation
(Table 1a), registries in nations with presumed consent
for deceased organ donation where the registry included
affirmative registration (Table 1b), and non-donor objection only registries in nations with presumed consent
(Table 1c). Similar regional information for individual
American states and Canadian provinces are presented
Appendices S2 and S3, respectively.
Details on how each registry is accessed and used at
the time of death is presented in Table 2, separated into
registries in nations with affirmative registration (Table 2
a), and non-donor objection-only registries (Table 2b).
Similar regional information for individual American
states and Canadian provinces are presented in Appendices S4 and S5, respectively.
Nation registry values are presented in Table 3 and for
individual American states and in Appendices S6 and S7,
respectively.
Implementation date
Israel has the oldest registry, which was implemented in
1978. Registries have become more common in the last
two decades, with a number of new registries in the last
five years (Lebanon, several American states (including
Florida, New Hampshire and South Carolina), and two
Canadian provinces (New Brunswick and Quebec)).
Ownership and operation level
Nationally operated and government-owned registries are
the most common (89% and 81% of nations, respectively).
The three nations with regional registries are the USA,
Canada and Iran. The USA and Canada have regional registries because deceased donation legislation falls under
state/provincial legal jurisdiction. Also organ donation is
Variability in deceased organ donation registries
linked to renewable government services managed at the
state or province level, such as the department of motor
vehicles and health insurance. Iran originally intended to
have a national registry but changed to a regional system
run by the 10 organ procurement organizations. This was
done to provide more options for Iran’s 31 provinces.
Three nations (Australia, France and Lebanon) switched
from having regional registries to a single national registry.
Minimum age requirements
Twenty-two nations (81%) have a minimum age requirement in order to register. In regions that do not, such as
the UK, Sweden and about half of the American states,
registrations can be made by individuals considered ‘minors’ if parental authorization is given at the time of registration and/or parents are responsible for making the
final decision at the time of procurement.
Expirations
Five nations (19%) have registrations that expire. This
often occurs in settings where the registrations are made
through a driver’s license or state identification card, with
reaffirmation required when the license/card expires. In
Belgium and Slovakia, registrations for individuals under
the age of 18 that are made by a parent or guardian
expire once the registrant turns 18.
Registration choices and organ specification
Eight nations have registries that record both ‘yes’ and
‘no’ responses (an affirmative choice or objection to
donation, respectively), nine nations record only ‘yes’
responses, and eight nations record only ‘no’ responses.
Two nations (Denmark and the Netherlands) are classified as ‘other’ because they offer more options than ‘yes’
or ‘no’. Registrants in Denmark can choose ‘yes’, ‘no’ or
‘unsure’. They may also add the condition ‘with next of
kin approval’ to their registration. The Netherlands offers
the choice of ‘yes’, ‘no’, ‘next of kin will decide’ or ‘a
named individual will decide’. While Israel records affirmative choices only, individuals have the option of checking ‘yes’ or ‘yes with religious permission’.
Seventeen nations (63%) allow registrants to specify
which organs to include or exclude from donation. Five
of these nations (Austria, Czech Republic, France, Portugal and Slovakia) are non-donor registries, so registrants
choose which organs to include or exclude from their
donation objection. The ability to specify organs to
include or exclude in the donor designation is more common in nations with explicit consent (83%) than in
nations with presumed consent (40%).
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Transplant International ª 2012 European Society for Organ Transplantation 25 (2012) 801–811
803
(a)
Organ specification
Registration modalities
Are specified
organs to be
included or
excluded from
donation?
Online
Paper
Telephone
In
person
Implementation
date
Operation
level
Registration
choices
Minimum
age
Australia
2000
National†
Yes & no
16
Yes
Include
Yes
Yes
Yes
No
Canada
1995–2007‡
Regional
Yes & no‡
None-18‡
Yes‡
Yes‡
Yes‡
Yes‡
Yes‡
Denmark
1990
National
Other
18
Yes
Include &
exclude‡
Include
Yes
Yes
No
No
Iran
2000
Regional
Yes only
18
Yes
Yes
Yes
No
Yes
Israel
1978
National
Yes only
17
Yes
Include &
exclude
Exclude
Yes
Yes
Yes
Yes
Kuwait
1988
National
Yes only
21
No§
n/a
Yes
Yes
No
Yes
Lebanon
2007
National
Yes only
15
Yes
Include
Yes
No
Yes
Yes
Malaysia
1997
National
Yes only
18
Yes
Include
Yes
Yes
No
No
Netherlands
1998
National
Other
12
Yes
Exclude
Yes
Yes
No
No
Additional details
Individuals 16–17 can register their intent, but
must be 18+ to register legal authorization
Described in Appendix S3
Registration choices include ‘yes’, ‘no’ and
‘unsure’. Individuals can also add ‘with next
of kin approval’ to their registration
In person registration is available at the organ
procurement units
Individuals have the option of ‘yes’ and ‘yes
with religious permission’. In person
registration is available at some coffee shops.
A pre-paid postcard is provided for mailed
registrations
Registry became computerized in 1996. In
person registration is available at the
Kuwait Transplant Society or transplant centre
Parental authorization is mandatory by law. In
person registration is available at the National
Organization for Organ and Tissues Donation and
Transplantation, Eye Bank Center in Quarantine
Hospital, and the Lebanese Order of Physicians
Registrants below the age of majority must have
parental authorization. Forms are available online,
in post offices and hospitals, by telephone request
and given out during public campaigns
Four registration options are ‘yes’, ‘no’, ‘next of
kin will decide’ or ‘a specified person will decide’
Rosenblum et al.
ª 2012 The Authors
Transplant International ª 2012 European Society for Organ Transplantation 25 (2012) 801–811
Nation
Can
registrants
specify which
organs to
donate?
Variability in deceased organ donation registries
804
Table 1. (a) Characteristics of donor registries operating in nations with explicit consent for deceased organ donation. (b) Characteristics of donor registries operating in nations with presumed
consent for deceased organ donation. These registries include affirmative registration in support of deceased organ donation. (c) Characteristics of non-donor registries in nations with presumed
consent for deceased organ donation.
Rosenblum et al.
ª 2012 The Authors
Transplant International ª 2012 European Society for Organ Transplantation 25 (2012) 801–811
Table 1. continued.
Organ specification
Nation
Can
registrants
specify which
Implementation Operation Registration Minimum organs to
donate?
date
level
choices
age
Registration modalities
Are specified
organs to be
included or
excluded from
donation?
In
Online Paper Telephone person Additional details
New Zealand 1980s
National
Yes & no
15
No
n/a
No
No
No
Yes
UK
1994
National
Yes only
None
Yes
Include
Yes
Yes
Yes
Yes
USA
1980s–2010–
Regional
Yes only
None-18– Yes–
Yes–
Yes–
Yes
Include & exclude– Yes–
The organ donor question on a driver’s license
form is compulsory. Decisions are renewed every
10 years with driver’s license renewal. In person
registration is available at Land Transport New
Zealand. Registrants can also update their donor
information by telephone
Authorization is sought from the next of kin for those
donors under 18. In person registration is available
through registering for a driver’s license, applying for
a Boots Advantage card, through a physician,
through registering for a European health Insurance
Card, and through text message
Described in Appendix S2
(b)
2006
National
Yes & no
18
Yes
Include
No
No
No
Yes
Belgium
1987
National
Yes & no
None
No
n/a
No
Yes
No
Yes
Colombia
2006
National
Yes only
18
No
n/a
Yes
No
No
Yes
Italy
2000
National
Yes & no
18
No
n/a
No
No
No
Yes
Lithuania
2000
National
Yes & no
18
Yes
Include & exclude
No
Yes
No
Yes
In person registration is available at organ
procurement organizations, the civil registry, and
the federal police. Objections can also be made
in post offices via telegram, free of charge
As there is no minimum age restriction, parents
may register their children and minors ‘capable
to express their will’ can register. Once a
registrant turns 18, they are invited to confirm
the registered will made by their parents. In
person registration is available at municipal
town halls
In person registration is available at the
National Health Headquarters
In person registration is available at
local health authorities
In person registration is available at any
health care institution and through a
family physician
805
Variability in deceased organ donation registries
Argentina
Organ specification
Registration modalities
Are specified
organs to be
included or
excluded from
donation?
Online
Paper
Telephone
In
person
Implementation
date
Operation
level
Registration
choices
Minimum
age
Slovenia
2004
National
Yes only
15
No
n/a
No
No
No
Yes
Sweden
1996
National
Yes & no
None
Yes
Exclude
Yes
Yes
No
No
Additional details
All individuals with health insurance are considered
‘undefined’ until they register ‘yes’. Registration is
only available by the completion of an official form in
person in the presence of a person authorized by
Slovenija-transplant at designated areas (certain
health institutions, pharmacies, Red Cross, Blood
Transfusion Institute)
When registered minors turn 18 they receive a letter
from the registry with their donor information so that
they can make any changes if necessary
(c)
Austria
1995
National
16
Yes
Include & exclude
No
Yes
No
Yes
Croatia
Czech Republic
France
Hungary
2005
2004
1997
1999
National
National
National
National
18
None
13
None
No
Yes
No
No
n/a
Include
n/a
n/a
No
No
No
No
No
Yes
Yes
Yes
No
No
No
No
Yes
Yes
No
Yes
Poland
Portugal
Slovakia
1996
1993
1997
National
National
National
16
None
18
No
Yes
No
n/a
Exclude
n/a
No
No
No
Yes
No
Yes
No
No
No
Yes
Yes
Yes
†New South Wales still operates a separate registry through their road transport authority.
‡Varies by province, see Appendix S3.
§There is a Notes section where individuals could write organs to include or exclude.
–Varies by state, see Appendix S2.
In person registration is available at the health department.
Individuals also have the option of registering via email
Registration is only available through a family physician
In person registration is available in hospital
While there is no minimum age restriction, parents of
registrants who are under 18 may protest. In person
registration is available at government offices or
through a family physician
In person registration is available through Poltransplant
In person registration is available through any health centre
Children under the age of 18 may register with parental
authorization
Rosenblum et al.
ª 2012 The Authors
Transplant International ª 2012 European Society for Organ Transplantation 25 (2012) 801–811
Nation
Can
registrants
specify which
organs to
donate?
Variability in deceased organ donation registries
806
Table 1. continued.
(a)
Nation
Intent or legal authorization
How the is registry accessed by staff
Personnel authorized to access the registry at the time of death
Argentina
Legal authorization
Computer
Australia
Intent & legal authorization
Computer
Belgium
Canada
Legal authorization
Intent & legal authorization†
Computer
Computer or telephone†
Colombia‡
Denmark
Iran
Israel
Italy
Kuwait
Lebanon
Lithuania
Malaysia
Netherlands
New Zealand§
Slovenia
Sweden
UK
USA
Intent
Legal authorization
Intent
Intent
Intent
Legal authorization
Intent
Legal authorization
Intent
Legal authorization
Intent
Legal authorization
Legal authorization
Legal authorization
Legal authorization
Computer
Computer or telephone
Computer
Computer
Computer
Telephone
Telephone
Computer
Telephone
Computer or telephone
Telephone
Computer
Computer or telephone
Computer & telephone
Computer or telephone–
Different levels of personnel in the procurement system are provided with a password by
INCUCAI (national transplant organization)
Medical professionals that include transplant coordinators, eye and tissue bank staff,
and intensive care specialists
Transplant coordinators authorized with a password
Varies by province, see Appendix S5. A mix of procurement staff, government staff,
transplant organization staff, nurses, physicians, and tissue bank staff
National Network of Donors staff and National Health Institute staff
Health care professionals only
Manager of deceased donation organ procurement unit
Ministry of Health’s National Transplant Center staff
National, regional and inter-regional transplant centers
Transplant center staff and hospital ICU staff
Transplant coordinators
Lithuanian National Transplantation Bureau (NTB) staff
National Transplant Resource Center staff
Protocol varies by hospital but is a specific staff member or physician
Transplant and tissue coordinators
Transplant coordinators and medical co-workers
Transplant coordinators, tissue coordinators, forensic medicine personnel
NHS Blood and Transplant employees working in the organ exchange part of the organization
Varies by state, see Appendix S4. A mix of organ procurement staff, tissue bank staff, eye bank staff,
and government staff
Nation
How is the registry accessed by staff
Personnel authorized to access the registry at the time of death
Austria
Croatia
Czech Republic
France
Hungary
Poland
Portugal
Slovakia
Telephone
Computer
Computer
Fax
Telephone or fax
Computer
Computer
Telephone or fax
Medical personnel with special code word
National and hospital transplant coordinators
Czech Transplantations Coordinating Center (KST) staff and local coordinators
Hospital personnel involved in the organ procurement process
Designated medical staff
Transplant coordinators working at Polish Transplant Coordinating Center (Poltransplant)
Authorized organ donation bureaus
Authorized Slovak Centre for Organ Transplantation (SCOT) staff
807
†Varies by province, see Appendix S5.
‡Registration is symbolic and the registry is not checked at the actual time of procurement.
§Registration is only checked upon the family’s request.
–Varies by state, see Appendix S4.
Note (b): All registrations in the non-donor registries are considered legally binding objections to donation.
Variability in deceased organ donation registries
(b)
Rosenblum et al.
ª 2012 The Authors
Transplant International ª 2012 European Society for Organ Transplantation 25 (2012) 801–811
Table 2. (a) How the donor registry is accessed and utilized at the time of death in nations with affirmative registration. (b) How the non-donor registry is accessed and used at the time of
death in nations with objection-only registries.
Rosenblum et al.
Variability in deceased organ donation registries
Table 3. (a) Number and proportions of registrants for donor registries (all nations that include affirmative registration). (b) Number and proportions of registrants for non-donor registries.
(a)
Nation
Total adult
population
Total
registrants
Total
affirmative
registrants
Argentina
Australia
Belgium
Canada‡
Colombia
Denmark
Iran
Israel
Italy
Kuwait
Lebanon
Lithuania
Malaysia
Netherlands
New Zealand
Slovenia
Sweden
UK
USAF
31
17
8
28
32
4
59
5
52
1
3
3
20
13
3
1
7
51
250
2 903 747
5 700 332
278 671
4 319 804
119 738
690 000
600 000
560 000
1 226 731
4 373
3 000
14 204
149 315
5 558 527§
3 700 083
2 243
1 500 000
17 400 213
96 417 971
2 405 706
5 682 688†
89 864
3 614 396
119 738
650 000
600 000
560 000
1 213 576
4 373
3 000
14 157
149 315
3 256 219
1 732 958
2 243
960 000
17 400 213
96 417 971
160
783
772
753
783
556
119
410
596
925
190
047
224
983
415
732
689
851
272
216
403
872
718
823
628
436
490
485
956
188
642
939
016
116
080
064
545
403
Total
objecting
registrants
498
17
188
250
041
644
807
333
–
40 000
–
–
13 155
–
–
47
–
1 605 909
1 967 125
–
540 000
–
–
Proportion of
the population
registered (%)
Proportion of
population registered
as affirmative (%)
9.32
32.05
3.18
15.02
0.37
15.14
1.01
10.35
2.33
0.23
0.09
0.47
0.74
39.75
100.00–
0.13
19.51
33.56
38.53
7.72
31.96
1.02
12.57
0.37
15.14
1.01
10.35
2.31
0.23
0.09
0.46
0.74
23.29
50.74
0.13
12.49
33.56
38.53
(b)
Nation
Total adult population
Total objecting registrants
Proportion of the population registered (%)
Austria
Croatia
Czech Republic
France
Hungary
Poland
Portugal
Slovakia
7
3
8
53
8
32
9
4
21 000
1 600
941
81 600
723‡
25 647
38 246
265
0.30
0.04
0.01
0.15
0.01
0.08
0.42
0.01
066
806
814
058
489
790
017
622
861
750
534
716
629
675
136
620
Notes (a): Adult population is defined as those 15 years of age and older, and was calculated from CIA World Factbook. Exact proportions will
vary slightly for nations with no minimum age and for those with age minimums higher than 15. Please see Table 2 for each nation’s minimum
age requirements.
†Australia’s affirmative registrations include 1 416 622 legal authorizations and 4 266 066 intent registrations.
‡Described by province in Appendix S7.
§Netherlands also have the options ‘‘Next-of-kin will decide’’ (594 698 registrants) and ‘‘A specified person will decide’’ (101 701 registrants).
–The actual value is 108.34. Possible reasons for the discrepancy between total registrants and 15+ population (15 is the minimum age to register) include that many New Zealanders live abroad and that the driver’s license renewal period is every 10 years. In order to receive a driver’s
license one must record their donation decision.
FDescribed by state in Appendix S6.
Notes (b): Adult population is defined as those 15 years of age and older, and was calculated from CIA World Factbook. Exact proportions will
vary slightly for nations with no minimum age and for those with age minimums higher than 15. Please see Table 2 for each nation’s minimum
age requirements.
‡Due to regulation, Hungary is unable to give a current figure. This figure comes from a study by Gabel [22].
Methods of registration
Of the four most common registration modalities, in-person registration is the most frequently available (71%),
808
followed by paper (mail/fax, 61%), online (50%), and
telephone (29%). There are also some uncommon methods, including email (Austria) and select coffee shops
(Israel). The UK has the most opportunities for registra-
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Transplant International ª 2012 European Society for Organ Transplantation 25 (2012) 801–811
Rosenblum et al.
tion, including applying online, and through telephone,
driver’s license, pharmacy advantage card, a physician,
registration for a European Health Insurance Card and
text message. None of the non-donor registries have
online or telephone registration.
Priority status
Priority status is the practice of providing preference to
individuals on the transplant waiting list who have registered to be deceased donors over those who have not.
Israel is the only nation included in this study that has
implemented this policy (in 2010). Priority is also
extended to registrants’ first degree relatives and to nondirected living donors [17]. A similar policy is also in
place in Singapore, where the registrants gain priority if
they agree to be deceased donors, and lose priority if they
opt out of donation [18].
Mandatory choice
Mandatory or mandated choice is an approach in which
individuals are required to register their donation choice.
New Zealand is also the only nation where indicating
one’s donation decision is compulsory in order to obtain
a driver’s license.
Accessing registry information at the time of death
Health care providers for all nations with registries
included in this review have a discussion with the nextof-kin about deceased donation as part of the organ procurement process. A registration can then be printed or
verbally communicated by authorized personnel to the
next-of-kin. All but two nations (Colombia and New Zealand) indicated that they always consult their registry
once a potential donor is referred and prior to discussion
with the next-of-kin. Colombia’s registry is more symbolic in nature, and is never used in the actual procurement process, while the New Zealand registry is only
consulted if the next-of-kin requests that a search be
made.
Registries are most commonly accessed through a computer (19 nations, 70%), and some systems offer additional telephone access. Computer access is less common
in non-donor registries (50% compared to 79% of registries that include affirmative registrations).
Individuals authorized to consult the registry vary
by nation but mostly include individuals typically
involved in the procurement process (e.g. transplant
coordinators, national transplantation organization staff).
Access is usually restricted to protect the privacy of
registrants.
Variability in deceased organ donation registries
Legal status of registered choices
While proof of registration may be used in the procurement consent process, not all registrations are considered
legally binding. Registrations that fulfill the legal requirements for authorization and/or objection to deceased
donation are valid legal documents and provide legal
authorization for procurement to proceed. However,
some nations still prefer to consider registrations as an
indication of the deceased’s intentions that are used in
discussions with next-of-kin. Of the 19 donor registries
that record affirmative registrations, 12 (63%) record
decisions that are legally binding. Exceptions include two
Canadian provinces (New Brunswick and Yukon) that
record the intent to donate. Australia’s donor registry was
originally an ‘intention’ registry, but later changed to be
legally binding. Australia records both legally binding
authorizations and intent registrations. All registrations in
the eight non-donor registries are considered legally binding objections to donation.
Proportion of adults (15+) registered
Of the 19 donor registries, New Zealand (with mandatory
choice) has the most registrants with 100% of their adult
population registered (51% affirmative registrations). The
Netherlands has the second highest proportion of registrations (40% of the adult population registered, 23%
affirmative registrations). None of the non-donor registries have proportions registered higher than 0.5%.
When values in regional registries are considered, there
are dramatic differences across American states and across
Canadian provinces. In the USA only affirmative registrations are recorded. In the USA, the state of Alaska has
the highest proportion registered (78%) while Vermont
has a strikingly low value (0.3%). The later has been
attributed to registration not being affiliated with its
department of motor vehicles. In Canada, the province of
New Brunswick has the most registrations (78% of
adults), while Nova Scotia has the highest affirmative registrations (65%).
Discussion
To our knowledge, this is the most comprehensive and
current global review of active donor and non-donor registries worldwide. We examined multiple characteristics
covering the history, design, and use of registries, as well
as the number of registrants. The results highlight the considerable variability in deceased donor registries worldwide. Most but not all registries are nationally operated
and government owned. There is usually a specific minimum age requirement in order to register. Some registries
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Rosenblum et al.
Variability in deceased organ donation registries
provide registrants with the option to select specific organs
to include and/or exclude from their donation decision.
Most registries are consulted by health professionals
involved in organ procurement through a computer after
a donor referral and before discussion with the next-ofkin. Just over half of the donor registries are considered
legally binding authorization to donation. In all national
donor registries, except New Zealand, the proportion of
adults (15+) registered (either affirmative decisions or
objections) is modest (<40%), and is often even lower
when only affirmative decisions are considered. Registered
objections in non-donor registries are rare (<0.5%).
There was also considerable variation amongst state and
provincial donor registries in the USA and Canada, respectively. While this may be done for good reason, present
inconsistencies may contribute to the large number of
Americans and Canadians who indicate that they are confused about how to become an organ donor [11,19].
When contrasting national registries there a very important distinction between donor and non-donor registries.
Both are primarily used to inform the procurement process and ensure a proper decision is made on behalf of the
deceased. Donor registries are most often used in nations
with explicit consent for deceased organ donation. These
registries are used in the promotion of deceased donation,
and can be used to target, measure and evaluate public
awareness campaigns in support of organ donation. Nondonor registries in contrast are used in some presumed
consent nations as a legal means for individuals to object
to being a donor. They are not part of a strategy to
improve deceased donation, and low proportions of their
adult population registered (currently <0.5% in all
nations) may be viewed positively by proponents of organ
donation. Interesting, some registries operating in presumed consent nations record both objections and affirmative decisions. These types of registries were considered
as donor registries for this review. However in some of
these nations (such as Belgium), registries were originally
conceived as objection to donation registries, and only
later expanded to also record affirmative decisions.
New Zealand is the only nation that was studied that
makes registration compulsory in order to obtain a driver’s license. The high proportion of adult registrants
(essentially 100%) suggests that this style of mandated
choice helps overcome apathy to register a donation decision. However, some individuals may be unprepared when
making their decision, making an uninformed or inaccurate choice. In New Zealand only half of the registrations
are affirmative. In comparison, in the USA where all
donor registries are affirmative only, some American states
have proportions of adult registrants that exceed 70%.
The strengths of our review include both the number of
registries that were studied and the range of registry char810
acteristics that were considered. The review extends previous studies which are smaller in scope and typically
limited to European nations [20–22]. These results help
inform the development of new registries, and allow
nations with active registries to frame their programs in a
global context. However, our study was limited by the
poor availability of published data on the individual registries. This prevented us from collecting information on 13
nations and caused a large reliance for information from
nation representatives. We also defined the adult population to be 15 years of age and older to create a base
denominator among nations and to facilitate comparisons.
However since not all nations use 15 as a minimum age
requirement, exact proportions will vary. Finally, our study
was not designed to confirm or refute whether donor registries effectively increase deceased donation rates.
Future studies are needed to investigate whether donor
registries successfully improve the number of deceased
donors. Direct comparisons need to be made between
rates of deceased donation in nations with and without
registries. There also needs to be an evaluation of individual registry design elements, so that specific recommendations for effective registry design can be made. This could
be accomplished through studies that measure how much
each design element (e.g. affirmative-only registry versus
an affirmative and objecting registry) contributes to
improved registration values and improved donation
rates. Finally the influence of population preferences on
the decision to register should be further investigated, as
what constitutes effective design may vary by a nation’s
ideals and principles.
In conclusion, we show registries are common around
the world and that they vary in their objectives, design
and use. This information can now be used to prompt
public discourse and quality improvement initiatives
amongst registry providers, to identify and support leading practices in registry use.
Funding
This study was supported by a Canadian Institutes of
Health Research Knowledge Synthesis grant. Dr. Amit
Garg was supported by a Clinician Scientist Award from
the Canadian Institutes of Health Research. The funding
sources had no role in design and conduct of the study;
in the collection, analysis, and interpretation of the data;
or in the preparation, review or approval of the manuscript.
Acknowledgements
We thank transplantation professionals from 47 nations
who provided information for this study.
ª 2012 The Authors
Transplant International ª 2012 European Society for Organ Transplantation 25 (2012) 801–811
Rosenblum et al.
Supporting information
Additional Supporting Information may be found in the
online version of this article:
Appendix S1. List of nations with deceased donation
programs.
Appendix S2. Characteristics of donor registries operating in the USA.
Appendix S3. Characteristics of donor registries operating in Canadian Provinces.
Appendix S4. How the donor registry is accessed and
utilized at the time of death in the USA.
Appendix S5. How the donor registry is accessed and
utilized at the time of death in Canada.
Appendix S6. Number and proportions of registrants
for USA.
Appendix S7. Number and proportions for registrants
Canada.
Please note: Wiley-Blackwell are not responsible for the
content or functionality of any supporting materials supplied by the authors. Any queries (other than missing
material) should be directed to the corresponding author
for the article.
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