Dealing With Public Solicitation of Organs From Living

Original Clinical Science
Dealing With Public Solicitation of Organs
From Living Donors—An ELPAT View
Mihaela Frunza,1 Kristof Van Assche,2 Annette Lennerling,3,4 Sigrid Sterckx,2 Franco Citterio,5 Nizam Mamode,6
Willij C. Zuidema,7 Lisa Burnapp,6,8 Willem Weimar,7 and Frank J.M.F. Dor9
Although transplant professionals have initially been reluctant to perform transplants after public solicitation of organs from living
donors, nowadays these transplants are increasingly being performed and reported. After clarifying the existing terminology, we
elaborate an operational definition of public solicitation that is consistent with the Ethical, Legal, and Psychosocial Aspects of
Transplantation classification for living organ donation. Our aim is to critically assess this phenomenon, from a legal, moral, and
practical perspective, and to offer some recommendations. From a legal point of view, we analyze the current situation in the
Europe and the United States. From a moral perspective, we evaluate the various arguments used in the literature, both in favor
and against. Finally, we offer a set of recommendations aimed at maximizing the organ donor pool while safeguarding the interests
of potential living donors.
(Transplantation 2015;00: 00–00)
P
ublic solicitation of organs from potential living donors
represents one of the most contentious issues in living
organ donation. The topic is often seen in both the (social)
media and the academic literature stirring debate and provoking controversy.1,2 As with other controversial topics,
the surrounding discussion is primarily dominated by emotional viewpoints, rather than by rational arguments. Public
solicitation is also an issue of debate when it comes to comparing existing transplantation practices. In the United
States, transplant centers routinely accept organs from living
donors who have come forward after public solicitation. In
contrast, in Europe, this practice is less frequent, except for
a few countries,3,4 where we see quite an increase of public
solicitation. For this reason, the Ethical, Legal, and Psychosocial Aspects of Transplantation (ELPAT) section of the European Society for Organ Transplantation instituted a working
group to address this topic from several perspectives. In this
position paper, the outcome of the discussions of the ELPAT
working group Living Organ Donation is presented. The paper aims to critically assess public solicitation of organs from
living donors, from a legal, moral, and practical perspective,
and to offer some recommendations.
Received 31 March 2014. Revision requested 12 May 2014.
Accepted 15 December 2014.
1
Department of Philosophy, Babes-Bolyai University, Cluj, Romania; SACRI (The
Academic Society for the Research of Religions and Ideologies), Cluj, Romania.
2
Bioethics Institute Ghent, Ghent University, Ghent, Belgium.
3
The Transplant Center, Sahlgrenska University Hospital, Gothenburg, Sweden.
4
Institute of Health and Care Sciences, The Sahlgrenska Academy at the University
of Gothenburg, Gothenburg, Sweden.
5
Department of Surgery, Catholic University Rome, Italy.
6
Department of Transplantation, Guys Hospital, London, United Kingdom.
7
Division of Nephrology, Department of Internal Medicine, Erasmus MC, University
Medical Center, Rotterdam, The Netherlands.
8
National Health Service (NHS) Blood and Transplant, Bristol, United Kingdom.
9
Division of HPB & Transplant Surgery, Department of Surgery, Erasmus MC,
University Medical Center, Rotterdam, The Netherlands.
Nizam Mamode acknowledges financial support from the Department of Health via
the National Institute for Health Research (NIHR) comprehensive Biomedical Research Centre award to Guy’s & St Thomas’ NHS Foundation Trust in partnership
with King's College London and King’s College Hospital NHS Foundation Trust.
Correspondence: Mihaela Frunza, PhD, Department of Philosophy, Babes-Bolyai
University, No. 1, M. Kogalniceanu St., 400084 Cluj, Romania. ([email protected])
Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
ISSN: 0041-1337/15/0000-00
DOI: 10.1097/TP.0000000000000669
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TERMINOLOGICAL CLARIFICATIONS
Public solicitation is defined in the literature as a public
search for an organ by prospective recipients or their representatives,5 either from a living donor or from a dead one.6
Regarding the scope of the topic of public solicitation, we
should note that public solicitation can be regarded as a continuum, as a gradient scale depending on how “public” the
solicitation becomes. At one end, there are cases where recipients appeal to their church community, their sports club, or
their former school colleagues. Then there are cases where
the appeal is made via (social) media to the general public,
in the form of billboards, advertisements, personal blogs, or
announcements placed on social network sites (such as
Facebook). The latter forms of communication are increasingly being used by prospective recipients.6 Finally, there
are specially designed websites that act as “brokers” between
recipients and potential donors (such as matchingdonors.
com or floodsisters.org).
Delineating the phenomenon of public solicitation is quite
challenging in itself because it can be addressed from various
perspectives. In principle, public solicitation could target
both deceased donation and living donation. We focused on
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living donation here because public solicitation for deceased
donation is generally prohibited as it conflicts with the
existing allocation systems based on anonymity.5,6 There
are 2 types of soliciting an organ: one that involves a financial
reward in exchange for the organ, and one that does not involve a financial reward (calls for altruism from the part of
potential donors). In this paper, we will focus on the latter.
In the literature, donors acting after public solicitation are
labeled either as “donors to strangers”, “directed altruistic
donors”3 or “unrelated directed donors”,7 which seems to
refer to different categories of people and consequently confuses the reader. A term that would be consistent with ELPAT
definitions for living organ donation8 is solicited “specified
donation,” whereby somebody donates an organ directly to
the recipient specified in the public solicitation, without being
emotionally or genetically related to that person. The proposal is consistent with our previous attempts to clarify the
terminology on living donation (see Table 1).
LEGAL ASPECTS
From a legal perspective, solicitation of an organ is
prohibited only if it involves financial inducement or comparable advantage.* Although, in the absence of remuneration,
public solicitation is legally allowed in North America and
Europe, the practical approach differs markedly between
both regions. In North America, all individuals in need of a
transplant are allowed to solicit an organ from a potential living donor by appealing to all sorts of media, and transplant
teams will often accept a potential donor who has stepped
forward in response to a solicitation.9-11 The approach in
Europe is different. Many European countries do not permit
unspecified donation,8 that is, anonymous organ donation
by a donor who is genetically and emotionally unrelated to
the intended recipient, thus precluding the possibility that potential donors who respond to public solicitation would even
be taken into consideration.12
For instance, in France living organ donation is only
allowed by a person who is a parent, spouse/cohabitant, sibling, child, grandparent, uncle, aunt, first cousin, or spouse of
the father or mother, of the recipient. In Germany, living organ donation is only allowed by a person who is a relative
*References at national level:
- United States: National Organ Transplant Act, section 301(c)(1), codified at
42 USC § 274e(c)(1) – Prohibition of organ purchases
- Canada: all Human Tissue Gift Acts issued at the level of the provinces
- Europe: e.g., United Kingdom: Human Tissue Act 2004, 32; Germany: Act on
the Donation, Procurement and Transplantation of Organs and Tissues, §§ 1718; France: Code of Public Health, Art. L1272-1; Italy: Act on “Provisions
Concerning the Procurement and Transplantation of Organs and Tissues”,
Art. 22bis; Spain: Royal Decree 1723/2012, Art. 33; Poland: Act on the Procurement, Storage and Transplantation of Cells, Tissues and Organs, Art. 43-44; The
Netherlands: Act on Organ Donation, Art. 32; Sweden: Act on Transplantation,
§§ 14-15
References at international level:
- EU (28 Member States): Directive 2010/53/EU on Standards of Quality and
Safety of Human Organs Intended for Transplantation, 2010, Art. 13
- Council of Europe (47 Member States): Convention on Human Rights and Biomedicine, 1997, Art. 21 (ratified by 29 Member States); Additional Protocol
concerning Transplantation of Organs and Tissues of Human Origin, 2002,
Art. 21-22 (ratified by 12 Member States)
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TABLE 1.
The ELPAT classification for living organ donation (adapted
from Dor et al8)
Specified donation
Direct donation:
When a person donates directly to his or her intended recipient
Donation to genetically and emotionally related recipient
(e.g. to one’s child, parent or sibling)
Donation to genetically unrelated but emotionally related recipient
(e.g. to one’s spouse, friend or acquaintance)
Donation to genetically related but emotionally unrelated recipient
(e.g. to an estranged child, parent or sibling)
Donation to genetically and emotionally unrelated recipient, but the
recipient (or the group to which he/she should belong) is specified
(e.g. to persons younger than 18 yr or a specific person in need of
transplantation, who was interviewed by the media)
Indirect donation:
When a person donates indirectly to his or her intended recipient
Donation to a specified recipient through an exchange program
Unspecified donation
Donation to an anonymous and unspecified recipient (e.g. donation to the
waiting list or to the recipient of an exchange couple in the case of
domino-paired exchange)
up to the second degree of consanguinity, spouse, registered
partner, or fiancé, of the recipient or by a person who has
an especially close personal relationship with the recipient.
In Greece, living organ donation is only allowed by a person
who is a spouse/cohabitant, a relative up to the fourth degree
of consanguinity, or a relative up to the second degree of affinity, of the recipient or, upon court approval, by a person
who has a personal relationship with and is emotionally connected to the recipient.12
Moreover, even in countries that permit unspecified living
donation, transplant centers remain unaccommodating toward
donation resulting from public solicitation, with notable exceptions, such as in the United Kingdom or the Netherlands.3,4
MORAL ASPECTS
From a moral perspective, we evaluate the arguments that
are most frequently invoked in the literature. Taking into account that the same type of argument is often used as a ground
both for and against public solicitation, we provide a thematic categorization aimed at avoiding possible confusion.
(1) Fairness in allocation
The first type of argument can be labeled as “fairness in
allocation.” Proponents of public solicitation underline
that, to ensure a fair chance of obtaining the scarce resource of an organ, one needs to be able to do whatever
it takes—including openly and publicly advertising for
the need of an organ.
Opponents claim morally relevant criteria of organ allocation are replaced by media-driven criteria of attentionseeking, such as who has the most appealing story, who has
the best means of publicizing his/her story more widely,
who has a better PR campaign for soliciting an organ, that
is, what some commentators label as “the beauty contest.”10
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Frunza et al
© 2015 Wolters Kluwer
Studies made on the announcement pages of those actively
seeking organs via social network sites show that a variety
of information is displayed on the recipient profile (not necessarily medically relevant) and that only partial disclosure of
donor-related risks is provided.13,14
A stronger version of this argument holds that, by using
advertising techniques, the search for organs will result in
“recipient shopping” whereby potential donors choose
among competing patients on the basis of a judgment of their
social worthiness.13 Relatedly, it is feared that public solicitation allows donors to circumvent the limits on conditional
donation because they can freely act on their discriminatory
preferences just by selecting a patient within their desired
group.13,15
In response, other authors note that public solicitation
does not deprive other potential recipients of an organ that
they otherwise might have received. Rather, the organ offered
via public solicitation is offered as a result of the solicitation
and would otherwise not have been available.16,17 Along this
line of reasoning, public solicitation remains fair in the balance, because possible inequities will be offset by a likely increase in the number of living organ donations.
In addition, it can be argued that public solicitation may
also reduce inequities in that it can be beneficial for individuals who suffer from a life-threatening condition and have
poor chances of obtaining an organ from the normal waiting
list, such as highly sensitized patients or patients with a rare
blood group.18
(2) Public awareness
The second argument is related to the greater public awareness arising from public solicitation. Some claim that this is
beneficial, as more people have the chance to find out about
transplantation and donation.18,19 If more people become
aware of the current gap between the supply and demand, this
increases the chances that some of them will also step forward
as donors. Others warn that media attention can do more
harm than good. Usually, media coverage involves only sensationalist, tabloid-like, controversial topics. A negative image of
transplantation might undermine the public trust20; as a result,
less people will step forward as donors and even deceased donation rates can be affected.
Both arguments start from an empirical observation: of
all the transplant cases, cases of public solicitation have a
more spectacular appeal and are more likely to be covered
by the media. There are many conflicting theories on the issue of media impact on society, some complaining about a
direct negative influence,21 and some speaking about
contested and negotiated meanings.22 Therefore, it is debatable whether media impact for public solicitation is as
straightforward as suggested by both the pro-arguments
and the contra-arguments outlined above. A more nuanced
theory concerning media impact is provided by the agenda
setting theory,23 which states that the media indeed establish the major topics for discussion, but that their influence
is limited by the public's existing preconceptions and thus
open for interpretation. From this perspective, which
seems to be supported by empirical studies of media campaigns on organ donation,24 public solicitation may have
a measurable impact on transplantation trends, but the
3
impact will be limited and shaped by a variety of factors
that are not entirely media-driven.
(3) Organ trade
The third argument concerns the relation between public
solicitation and organ trade. Proponents of public solicitation
claim that, by bringing more organs to the transplantation
process, it decreases the temptation of patients to resort to illicit means to obtain an organ. This way, public solicitation
contributes indirectly to the elimination of organ trade. In
contrast, opponents hold that public solicitation might be a
camouflage for organ trade because buying and selling organs can easily be covered by it. It is conceivable that, if the
recipient is vulnerable, a prospective donor might show up,
prove medically compatible, and then ask for financial compensation. From their part, donors may also be affected because they might be tempted to offer an organ in exchange
for money.
The threat of organ trade is probably the most powerful
argument against public solicitation, and it is supported by
empirical observations. For instance, the founders of the
site matchingdonors.com, have admitted that several clients of their site (would-be recipients) have received inappropriate messages from persons willing to sell them an
organ.1 In a study done on Facebook profiles of wouldbe recipients, at least 3% reported having received the
same type of messages.13,14 It is hard to estimate whether
other recipients have received similar messages, or even
whether they have reached a financial settlement with the
donor. However, transplant centers may attempt to eliminate the suspicions by carefully scrutinizing the motivations of the pair and, in case of doubt, interrupting the
procedure or pursuing unspecified donation only.
PRACTICAL ASPECTS
Public solicitation can raise practical concerns for transplant professionals. Sometimes, individuals interested in donating to a particular recipient wish to go ahead with the
operation right away, or wish to impose conditions on the
transplantation. Although it is important to take their wishes
into consideration whenever possible, safety cannot be
circumvented by expediency, and not all conditions may be
found acceptable, for instance, donation specifically to certain categories of people.3,18 Transplant centers can prevent
this “pressure issue” by making their procedures for living
donation as transparent as possible and communicate them
upfront with the potential donors.
Compared to other types of living donation, donation in
response to public solicitation seems to carry a higher risk
of problematic donor motives. This in turn increases the likelihood that transplant professionals would facilitate an act
that is objectionable and, if exposed, may both undermine
the public trust in the integrity of the transplant system and
severely harm their own reputation. Because organ donation
requires the involvement of social structures, such as transplant centers, and because it can negatively impact on third
parties, rules should be imposed to minimize the chance that
organs would be allocated on other than morally relevant
criteria.15 To prevent that transplant teams act as facilitators
of organ trade or get involved in transplant procedures which
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would go against their best medical judgment, transplant
centers should set clear and transparent standards for the
screening of potential donors who have stepped forward in
response to a public solicitation. These standards should include appropriate medical and psychosocial assessments. In
some countries, an independent donor advocate is assigned
to assist donors in making an informed choice and, when
necessary, to discern the presence of problematic motivations, and guarantees that the organ would only be removed
if it is not harmful to the donor and the transplant has a sufficient chance of success.
Some centers make an additional distinction between cases
of solicitation where the recipient pays a fee to have the ad
displayed publicly (i.e., on broker sites or other types of paid
advertisement) and those where no fee is involved (i.e., in humanitarian campaigns or Facebook accounts/pages) to avoid
possible accusations of organ trade.3 However, the distinction is not as clear-cut as it may seem (e.g., Facebook may
charge fees for promoting a post/page to a wider audience),
and it may seem incongruent with the tendency observed by
some of access to health care systems being made dependent
on people's ability to pay.18
An additional practical problem would arise when transplant centers would be flooded with inquiries after a highprofile case of public solicitation. A case has been reported
where one announcement attracted more than 600 potential
donors who offered to be tested.13,25 However, because few
transplant centers will be able to deal with that many offers,
it can be helpful to establish protocols on how to manage the
situation where multiple donors step forward in response to
public solicitation.18 Centers that have programs of unspecified donation or paired donation could consider directing the
surplus of would-be donors to these programs. Again, it is
important that centers are transparent about these policies
and use the opportunity to inform potential donors, who
stepped forward in response to public solicitation, also about
other available options (i.e., unspecified donation).
Sometimes, centers face situations that are problematic
and carry a reputational risk. This was the case when the
Minnesota transplant center was approached by a group of
people offering to donate “en masse” on the basis of religious
motives.9 The center performed an ethical analysis and subsequently turned the offer down. However, the members of
the group later managed to donate on a case-by-case basis
at hospitals across the world, as specified donations after
solicitation.26
RECOMMENDATIONS
On the basis of our overview and discussion of the various
arguments invoked in the literature on the issue of public solicitation for living donation, we would propose the following recommendations:
Taking into account that public solicitation is likely to remain a clinical reality in countries allowing living organ donation by a donor who is genetically and emotionally
unrelated to the recipient, transplant centers in these countries should review their screening procedures of potential
donors to deal responsibly with donation after public solicitation. Without placing an additional burden on donors
showing after cases of public solicitation, these policies
should take into account the specific risks and practicalities
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discussed above (possibly excess calls, possibly problematic
motivations, etc.). These policies should be guided by transparency, accountability, and comprehensive oversight.
However, as long as donor shortage persists, we should
not condemn patients, who do not have a live kidney donor,
or only have a very slim chance of finding a suitable donor
(e.g., highly sensitized patients) when they decide to publicly
solicit for a live donor. We, as transplant community, should
optimize basic elements, such as national organ donation
laws to maximize the deceased and living donor potential;
we should remove misconceptions and disincentives for
live donors to step forward.27 Paired kidney exchange and
domino-paired kidney exchange should be instated. Better
information should be provided to our patients (e.g., homebased education), to health care professionals, and the
general public about the advantages of live donor kidney
transplantation. Specific attention should also be drawn to
the potential of unspecified donation in reducing the donor
shortage. In countries where unspecified donation currently
is not permitted, legislation might need to be reconsidered accordingly.28 Close collaborations in national multidisciplinary working groups to address the aforementioned issues
seem to be fruitful. Meanwhile, in our opinion, we should
deal with public solicitation and respect solicited donors as
regular specified live donors, despite practicalities that may
arise in the donor screening process.
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