Professional Documents
Culture Documents
Valrie Gateau
possible that her choice has as one of its consequences a relatives death
(Siegler, 2004, p. 16; Fournier, 2004, p. 67).
So, one may claim that recourse to informed consent enables people truly
to exercise their autonomy, but it provides a smaller number of organs from
post-mortem donations and increases the strain on healthy living donors,
who may be faced with a difficult choice that bears on the lives of two
people.
Presumed consent seems to be more appropriate with respect to the
patients needs. Yet, it has been heavily criticized for ethical reasons. Its
opponents claim that it is a hypocritical practice and, therefore, that it is
unethical. As to the first point, it is held to be a hypocritical practice because
of the way in which it is generally formulated. Countries that have adopted
this system resort to a discourse emphasizing donation; they encourage their
citizens to call for the donation of their organs. But, as some
commentators have remarked, presumed consent does not define the means
by which one can donate ones organs (Veatch, 2000, pp. 167-174; Godbout
& Caille, 1992, p. 130). It defines the means on which the state can or cannot
rely to retrieve the organs of a deceased person to treat another person.
Therefore, presumed consent is no consent at all: it assumes consent without
asking for it and contents itself with allowing those who oppose retrieval to
express their refusal. Now, without consent, organ retrieval cannot be
considered as resulting from donation, but rather as resulting from a societal
appropriation of organs performed by the state through routine salvaging.
However, countries resorting to presumed consent have kept on using a
muddled kind of rationale, which amounts to an uneasy compromise
between facts (consent is presumed) and reference to donation (Veatch,
2000, p. 169).
Besides the issues raised above, it also has to be acknowledged that it is
difficult to put presumed consent in practice. Actually, since the beginning
of the 1990s, lawyers and social scientists have shown that the adoption of
presumed consent is an exception from a legal perspective and that it is
generally considered suspicious. To adopt this mode of consent for so
singular a practice and, moreover, a practice that deals with the body of a
deceased person, absolutely contradicts the principles of common law.
Accordingly, to consider everybody as implicitly consenting to the retrieval
of ones organs is held to be, to a large extent, hypocritical: in France, only
40% of the population has addressed the topic with ones relatives (Agence
de Biomdecine, 2006). Worse, to rest content with merely consulting the
record of refusals might cause the system to loose all of its credibility, since
it amounts to including in the group of those who supposedly consent to
the retrieval of their organs all those who have not taken officially sides
HEC Forum (2009) 21(2): 135149 139
during their lifetime (Pharo, 1997, p. 11). Actually, it is indeed the case that
studies show that even in countries where consent is presumed, transplant
teams ask families for their opinion and respect their refusal (Deutsche
Stiftung Organtransplantation, 2006, pp. 82-85). This leads one to suspect
that, faced with a system perceived as hypocritical and ethically dubious,
transplant teams end up organizing to ascertain the deceaseds will or of that
of her relatives, just as it would be the case in the opting in system.
This circumstance is undoubtedly the reason why all transplanting
countries are still faced, whatever the mode of consent they have chosen,
with an important shortage of organs for which no satisfactory solution has
been yet found. At the present time, three main solutions have been
suggested, both by transplant teams and social scientists: the first aims at
increasing altruism; the second proposes to encourage donation by way of
financial incentives; the last suggests that the state be authorized freely to
use the organs of the deceased person with or without her consent (opting
out system or routine salvaging).
Current Proposals
The first solution amounts to increasing altruism. It consists of a set of
various proposals that have in common the will to increase the availability of
organs without giving up the donation system altogether. The first kind of
proposal, made both by Glannon and Etzionni, advocates the endorsement of
a communitarian approach. It relies on the claim that any form of
constraint that would lead to the increase of the number of available organs
is at odds with ones rights freely to use ones body, even after ones death.
What matters is to increase the number of donations by setting up moral
incentives. This would thus amount to convincing people that they have a
moral obligation to donate their organs for the sake of society, for it is
society that has enabled them fully to live their lives (Glannon, 2003, p.
155). Some of these moral incentives can go with psychological techniques
of persuasion, such as the signing of a donor card in front of third parties
(Etzioni, 2003, pp. 1-18). For others, the solution rests in a required
response, also known as mandated choice (Veatch 2000 pp. 175-181;
Chouhan & Draper 2003). In that case, one is not required to donate, but to
express a preference by ticking a box on an official document (driving
licence, tax-return, etc.) to clarify ones choice. Anyone could thus choose
either to donate or not ones organs, or to remain undecided. A centralized
record would allow competent authorities to know the choice of the deceased
person, so as to act in accordance with her will. The last means of increasing
altruism amounts to increasing the set of potential donors. This is Bartzs
140 HEC Forum (2009) 21(2): 135149
extent hypocritical, since the poor routinely do what the rich refuse to do
(Veatch, 2003). Social usefulness is a source of dignity that is not to be
neglected (particularly in times of organ shortage), and it is indeed unfair to
hold that the financial incentives are to be despised as a source of indignity
(Foppa, 1992). Organizing the market through public authorities would
permit it to function in terms of justice and equity, which would be able to
limit the traffic. It is unfair to let recipients die if financial payment would be
an efficient and effective means to compensate for the shortage of
transplantable organs.
The shortcoming of this solution does not lie in its results: organ
trafficking as it now exists provides good grounds to assume that a market in
organs may well increase the number of available organs. The problem
raised is a matter of principle; retrieval and transplant have always been
founded on the refusal to market the human body in the name of the respect
owed to the dignity of the human person, a respect that has commonly
involved the inviolability of ones body and the impossibility of selling it.
I am not, as a matter of principle, opposed to a market-based solution.
Actually, I am not convinced that the introduction of money in an action that
is similar to organ donation is enough to change its moral value. In fact,
some commentators even claim that the paradigms of donation and altruism
might well have had detrimental consequences on the health system
(Beaufils, Ginon & de Rochegonde, 2007, p. 104). Yet, this solution raises
real practical challenges, for it seems difficult to set up an incentive that
would be attractive enough to increase the number of available organs and
fair enough to avoid being perceived as a constraint. Furthermore, this
solution, although it has been a live issue among professional ethicists, has
not so far been endorsed by political leaders or doctors involved in transplant
(Herissone-Kelly, 2004; a few doctors are now beginning to support this
solution, such as Benjamin Hippen, see Hippen, 2006, pp. 47-61); even the
attempts to reward for donations that might seem legitimate, such as a tax
deduction or the covering of funeral expenses, are regarded with much
suspicion and generally opposed strongly (now, it is quite puzzling to think
that one can deduce from ones income the donations made to a charity, but
not the donation of ones organs). All things considered, given such
reluctance, it very unlikely that this solution will be adopted, at least in
western countries.
The third solution is the one that is commonly supported both by people
involved in transplant and politicians; it amounts to the appropriation of
organs by the state without consent, or with only a very restricted possibility
of refusing retrieval. It rests on the idea that the good of living people must
be given priority over the good of the dead, and that what matters most are
142 HEC Forum (2009) 21(2): 135149
the lives that it is possible to save (Harris, 2003, pp. 130-134). According to
Harris, it is true that autonomy is a principle that must prevail in all the
decisions we make, even those concerning the fate of our bodies after our
death. It is also true that some interests outlive death, so to speak, and that
the respect of our will with respect to what our body is to become is one of
those interests. However, Harris argues that this is the case only when this
choice does not render impossible the survival of living people. Harriss
main point is that retrieval may go against the interests of a dead person as
such interests were expressed during her lifetime, but that the harm thus
incurred is nothing compared to the risk of loosing innocent lives in the
event of the refusal of retrieval (Harris, 2003, p. 133). According to Harris,
organ retrieval must be considered a legal obligation, just as military service
or jury participation are, for the interests of society must be given priority
over private interests. Harris even goes further: he claims that somebody
who does not understand this obligation to rescue or who refuses to submit
to it is not a moral agent and that it will be incumbent upon her to explain
why she deliberately chooses not to save innocent lives (Harris, 2003, p.
133). Some authors concur with Harriss point of view (Dagognet, 2002, p.
141; Spital & Taylor 2005, pp. 300-303). From an ethical standpoint, this
solution raises an issue of justice: how to be just when the whole problem
lies in procuring and allocating resources that are scarce? For the advocates
of routine salvaging, the solution consists in giving up autonomy (that is,
the deceased persons autonomy) in favor of beneficence (the health of the
living). There are ethical arguments in support of this view, even though it is
unlikely that it will gain unanimous backing. Once again, the drawback of
such a solution appears to be its practical implementation. For it, indeed,
seems impossible to put into practice as long as people remain prone to
giving consent significant value. For instance, when citizens are polled, it
has been observed that they call for the setting up of informed consent, as it
has recently been the case in the United Kingdom and Switzerland
(Campbell, McLean, Gutridge et al., 2008, p. 104; Mdecine des
transplantations, 2001, p. 26). In countries where consent is presumed, the
population is often not in favor of such a policy. For example, a study
carried out in 1997 demonstrated that in France 80% of those who answered
think that their consent must be explicit for their organs to be retrieved and
are opposed to presumed consent (Carvais & Hermitte, 2000, pp. 848-855).
It is difficult to see how it is possible to shift to routine salvaging without
consent in such a context, even the more so when it is acknowledged that
salvaging is performed by people, not by machines. Can one really think that
doctors would routinely retrieve organs without being concerned with the
opinion of the person from whom the organ is removed and his relatives?
HEC Forum (2009) 21(2): 135149 143
routine salvaging justify their choice not only by claiming that it serves the
good of the patients, but also because this solution makes organs available at
an affordable cost (Harris, 2003, p. 132; Spital & Taylor, 2005). If these
authors resort to a financial argument in addition to the ethical argument of
the greater good, it is because they are well aware that transplantation is a
technique that is encouraged both for ethical and financial reasons. It is less
costly to transplant patients than to abstain from transplanting them, and a
European Union report has shown that transplanting 10,000 patients
suffering from renal insufficiency leads to a yearly cost saving, compared to
the expense of dialysis, of 200 millions Euros (European Group for
Coordination of National Research Programmes on Organ Donation and
Transplantation, 2006, p. 9). I do not think that it is problematic that debates
on organ shortage involve financial arguments. Yet, what raises ethical
concerns is the fact that the financial aspect of our choices in transplant-
related matters is neither addressed in public debates, nor is it included in the
public information on which those debates rely. The discourse on salvaging
and transplant is structured by references to notions such as altruism and
donation, and except when it comes to prohibiting the sale of organs
financial issues are never broached. Yet, transplant is not the only medical
practice about which financial arguments should to be taken into account,
and it is now quite usual that information relating to health policies includes
financial details and explanations about the choices that are made to save
resources. Why not addressing these issues in the case of transplant too?
Quite oddly, another crucial point does not appear in the information
given to the public: it concerns brain death and the characteristics of this
condition (in particular, maintenance of respiration and heartbeat). Although
information leaflets (in France) state that this kind of death is rare, they
neither clearly indicate its physical properties, nor the reasons why such a
state is held to be death. It is just as if the conviction that the salvaging of
organs is right would make it unnecessary, almost dangerous, to debate
about the legitimate concerns raised by this particular kind of death. Plenty
of these concerns have been voiced within the medical community, among
professional ethicists, and in the public opinion. Some doctors and
professional ethicists object to the definition of brain death by calling to
attention that the definition of death should have no relation to organ
salvaging (Machado, 2003, p. 201; Jonas, 1974, pp. 132-140). Others
consider this definition to be a kind of deception set up to enable the
retrieval of organs, even though neither medical staff nor relatives really
believe this state to be death (Singer, 1994, p. 50; Truog, 2007, p. 274).
These authors suggest that it would be appropriate to stop operating by
reference to the dead donor rule and to accept the harvesting of people
HEC Forum (2009) 21(2): 135149 145
who, without actually being dead (and it is, indeed, the case that some life is
maintained to preserve fresh organs), can be said to be in an irreversible
state that will shortly lead to death. In the public, one can observe the
coexistence of two conceptions of death that influence the acceptance of
organ salvaging (Herpin and Paterson, 2000, pp. 346-351). On the one hand,
there is a centralist conception of death, according to which death occurs
when one organ (either the heart or the brain) stops functioning; it is then
possible to retrieve organs. On the other hand, there exists an integralist
conception of death, according to which death amounts to the stopping of the
vital functions of the organism considered as a whole. In that case, it is
difficult to conceive how one is to retrieve organs at all. That the general
public be not introduced to these various debates is quite problematic, since
they show that: 1) the refusal of organ salvaging is not necessarily selfish
behavior but depends on the conception of death one entertains; and 2) the
reluctance vis--vis brain death is not due to an audience opposed to
scientific progress, but that it is indeed shared by medical teams.
Accordingly, before suggesting a more constraining solution to
compensate for the shortage of organs, it is important to modify the
information the public receives and to introduce the public to the
unacknowledged stakes associated with transplant (financial aspects,
definition of death). On the one hand, it is part and parcel of the requirement
of truthfulness involved in the respect of autonomy. On the other hand, it
would allow anyone to get a more accurate understanding of the situation
and would make it possible to subscribe, or not, to health-related decisions
that bear on our commitments to others and on the relation we have with our
body. By trying to increase governmental constraints without being clear
regarding the stand we are taking about what we want to do, we might be led
to consider that the problem that of the causes of our reluctance to accept
organ salvaging is solved when actually it is not, and thereby to harm to
the whole field of transplant. The very fact that we are not willing to include
such data in the information given to the public is quite telling about the fear
of causing public confusion. But the confusion already exists: there are
plenty of accounts given either by relatives or transplant patients that refer to
those who had been harvested as between life and death. Perhaps is it time
to admit the fact that the salvaging of organs on brain dead persons is a
difficult way of operating, both for doctors and relatives, because dividing
up a (dead?) body that is considered in all other situations as an inviolable
entity, appears to involve some sort of transgression. To acknowledge this
circumstance seems ethically more appropriate, to the extent that it leads to
an honest acknowledgment of the reality of what doctors and relatives faced
with transplant go through, rather than denying it (Kirklin, 2003, p. 195). To
146 HEC Forum (2009) 21(2): 135149
extent that the cost it has for individuals corresponds to a decision made in
all conscience. Some already hold that this is the appropriate solution for
France, where currently consent is presumed: Didier Sicard (former head of
the French National Consulative Ethics Committee), Beaufils, Ginon and de
Rochegonde (respectively a doctor, a jurist, and a psychoanalyst) consider
that it is time to trust the public and turn to an explicit mode of consent
(Beaufils, Ginon & de Rochegonde, 2007, p. 107; Quelles rvisions de la loi
de biothique, p. 27). I share their opinion. Moreover, it is very likely that
we would be pleasantly surprised: nothing tells us that the public will resist
transplant if its difficulty is acknowledged and if the public is given the
possibility of understanding the complexity of the situation.
REFERENCES
Agence de la biomdecine (2008). Le don le prlvement et la greffe
dorganes et de tissus. [On-line] Available: www.agence-biomedicine.fr
/fr/activite-org.aspx.
Beaufils, F., Ginon, A.-S. & De Rochegonde, T. (2007). Le prlvement
dorganes: donner voix au consentement. Esprit, 336, 96-108.
Bartz, C. E. (2003). Operation blue, ULTRA: DION The donation inmate
organ network. Kennedy Institute of Ethics Journal, 13 (1), 37-44.
Campbell, A. V., McLean, S. A. M., Gutridge, K. & Harper, H. (2008).
Human tissue legislation: listening to the professionals. Journal of
Medical Ethics, 34 (2), 104-108.
Carvais, R. & Hermitte, M.-A. (2000). Les franais attachs au droit
commun rticents lgard du droit de la biothique. In: R. Carvais & M.
Sasportes (eds.), La greffe humaine (in)certitudes thiques: du don de soi
la tolrance de lautre. Paris: PUF, pp. 843-869.
Chouhan, P. & Draper, H. (2003). Modified madated choice for organ
procurement. Journal of Medical Ethics, 29 (3), 157-162.
Dagognet, F. (2002). Questions interdites. Paris: le Seuil.
Deutsche Stiftung Organtransplantation (2006). Improving the knowledge
and practices in organ donation. Madrid: Organizacion Nacional de
Trasplantes.
Emson, H. E. (2003). It is immoral to require consent for cadaver organ
donation. Journal of Medical Ethics, 29 (3), 125-127.
English, V. & Sommerville, A. (2003). Presumed consent for
transplantation: a dead issue after Alder Hey? Journal of Medical Ethics,
29 (3), 147-152.
Etzioni, A. (2003). Organ donation: a communitarian approach. Kennedy
Institute of Ethics Journal, 13 (1), 1-18.
148 HEC Forum (2009) 21(2): 135149