Living unrelated donation and the religious arguments proposed by Jesus Christians

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A

LTRUISTIC LIVING UNRELATED ORGAN DONATION AT THE CROSSROADS OF ETHICS AND RELIGION

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CASE STUDY

Mihaela Frunză

Postdoctoral fellow at the University of Medicine and Pharmacy “Gr. T. Popa”, Iași, Romania.

Lecturer at the Department of Systematic Philosophy, Babeş-Bolyai University, Cluj, Romania.

Email: [email protected].

Sandu Frunză

Political Science Department, Department of Communication and PR, Faculty of Political, Administrative and Communication Sciences, Babeş-Bolyai University, Cluj, Romania.

Email: [email protected] Cătălin Vasile Bobb

Department of Systematic Philosophy, Babeş-Bolyai University, Cluj, Romania; “Gh.

Zane” Institute of Economic and Social Researches, the Romanian Academy, Iași, Romania.

E-mail: [email protected] Ovidiu Grad

University of Medicine and Pharmacy „Iuliu Hatieganu”, Cluj, Romania E-mail: [email protected]

Abstract: This article discusses a series of ethical and religious elements that occur in the debate concerning altruistic living unrelated organ donation. Our main focus is on the ethical attitude of altruist donation. In order to illustrate the connections between ethics and religion we use as a case study the group of the so-called “Jesus Christians”. It is evident that this group, as a case study, is more important for the ethical and religious issues than for the medical issues related to organ donation and transplantation. However, it suggests the potential that, in certain cultural contexts, ethics and religion may have in promoting the idea of altruist donation.

Key Words: ethics, religion, medical ethics, living unrelated donation, the Jesus Christian donors, altruistic donation, organ commercialization

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Religious beliefs, medical ethics and altruistic organ donation

Living unrelated donation out of purely altruist reasons is a phenomenon that has started to develop especially in the US and the Northern European countries. US statistics for the recent years show a slow, but encouraging increase in numbers of organs transplanted in altruist donor-oriented programs. Actually, if compared both with deceased donation and living related donation, living unrelated donation (LURD) is the only category that steadily increased after 1990.¹

Initially, this category of donors was encountered by the medical body with suspicion and examination of a supposed psychopathology.

Since their consideration as medical subjects, living donors have raised the attention of practitioners as a peculiar category that, in the absence of an explicit therapeutic benefit, was assimilated to the category of healthy volunteers involved in clinical experimentation². In this respect, the medical response was similar to the legislative reluctance towards this category of donors discussed in the section below. However, psychological studies conducted on unrelated living donors concluded that:

“all of these remarkable people felt good about having donated and none experienced psychological complications or regrets after donating. More than half the donors actually thanked the health care team for having given them the opportunity to donate and offered to speak about their experiences to help promote organ donation.”³

Nevertheless, the psychological studies described above are usually limited in that they cover very small numbers of donors, and cannot be generalized in order to predict the behavior of larger social categories.⁴ Thus, although physical altruist donors can be described in psychological terms, defining what “altruist donation” is in general and conceptual terms may prove to be rather difficult. Usually, an act is called altruistic provided that it is done out of pure disinterest, for the sole benefit of the recipient, and without looking for anything in return. In this respect it exceeds the sphere of acts from duty, entering the sphere of superogatory acts (those acts that are highly praised and respected, without a possibility of being prescribed – such as the acts of charity). Elsewhere we mentioned about the puzzlement the double fold “altruistic” unrelated donors have created (giving the fact that organ donation, regardless of the type, must be altruistic in order to be legal in most countries).⁵ To this, another paradox is added: ethically speaking, altruist acts are highly praiseworthy, but simultaneously singular and imprescriptible en masse. If one wishes to

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encourage this type of actions, one may recommend it by promoting it through a visible model, and hope that the others will follow it.⁶

This is the context in which in this paper we would like to discuss the case of a small (but by no means unimportant) religious group, self-called

“the Jesus Christians”⁷. Undoubtly, they cannot be taken as a model that could solve, even partially, the problem of LURD. However, they represent a particular case of the interaction between ethics and religion in the context of an objective lack of solutions in the case of a serious medical issue, namely transplantation and the insufficient donors’ number. Their connection with transplantation ethics resides in the unusual particularity of the group, consisting in more than twenty live donations of kidneys to strangers.

The interest of the group for unrelated kidney donation was fuelled by a no-means extraordinary event: on a flight to Australia, Dave McKay incidentally saw a movie on the subject of kidney donation from a nephew to his beloved grandma. Labeled “A Gift of Love”, the movie itself was a pretty much conventional drama in which a young man manages to save the life of a meaningful person, although at the cost of sacrificing his passion for professional sport. What resulted out of this movie watching was that the Jesus Christian founder discovered a new idea of doing something sensational under a religious cover: namely, transforming the group into “the kidney cult”. Dave McKay told everybody in the group that he would be willing to donate a kidney, and encouraged them to volunteer as well if they shared his idea. During the next years, more than 20 members (including him) managed to donate a kidney to a stranger, despite the vivid controversies that surrounded at least some of the donation acts.

Their decision to donate kidneys coincided with the stage when living kidney donation was established as a quasi-safe medical operation that did not pose significant risks to the health of the donor, and when the steadily increasing numbers of awaiting patients, combined with the not so rapid increase in the availability of kidneys from deceased or living related donors, made the transplantologists search for alternative organ sources. Thus, initiative of the Jesus Christians had a good timing, coinciding with physicians’ opening towards living unrelated organ donors, which considerably eased their actions. However, this does not mean that their actions were unanimously applauded by medical practitioners. Quite to the contrary: with the exception of a handful of doctors, many physicians were reluctant to use a kidney donated out of religious reasons⁸. There were many cases when donors’ intentions were turned down by hospitals, which politely (or not so politely) refused to perform the operations, making the donors and the recipients search for a more open medical institution.

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The doctors’ dilemma whether to accept as donors a group of people driven by religious convictions is very much in the frame of generally questioning unrelated donors: what is the donor benefit if s/he does not know the recipient, does not have a meaningful relation that would be threatened provided that donation would not take place? Could there really be altruistic donations between strangers? Could one eliminate the specter of commercial donation from such an act between two strangers?

Is it really appropriate to put commercialism out of equation or is it better to acknowledge that the need for organs can be compensated either by material or by non-material means? Is the act of donation based on one’s free will, fully consented and fully understood, all things considered (including eventual problems and mishaps)?

In an attempt to summarize the possible and actual ethical attitudes towards living unrelated donation, we can find several possibilities:

1) either LURD is seen as a suspicious practice tainted by the specter of commercialism and therefore raises ethical and juridical questions;

these suspicions should thus be eliminated or at least rigorously controlled;

2a) or LURD is deemed acceptable provided that it is founded on an attitude entirely based on an ethical conduct (altruism in a purely ethical sense);

2b) or, respectively, LURD is justified by a moral attitude⁹ based on religious conduct (altruism as attitude of a Biblically inspired “Good Samaritan”);

3) finally, LURD is understood as highly desirable and therefore permissible even in the event of commercial donation, though it needs to be somehow regulated to avoid donors’ exploitation (via a system directly based on financial incentives or via a system based on various alternative incentives).

All these possibilities are debatable and to a certain extent applicable in the case of Jesus Christians and have already been at least partially addressed – this is why we propose to review the arguments and counter- arguments directed to them.

Controversial issues: Between altruistic donation and business manipulation

There are some authors who claim that LURD is merely a legal fiction¹⁰ that is deeply stamped by commercialism. In a passionate account against the possibility of organ commercialization, Miran Epstein clearly makes a link between “unrelated” and “commercial”. He also blames the doctors for over-using transplant operations, and thus being indirectly the cause beneath the invention of the category of unrelated living donors:

“Many of the social crises that we currently face are just symptoms. Yet the underlying problems

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must be addressed as well if we are to lead the kind of life that human beings can and deserve to have.

The organ crisis is no different. Instead of medicalizing and ethicalizing it, let us direct our main efforts at draining the swamp. Organ transplantation, like mosquito repellent, should be used sparingly, and only when there is no other choice.”¹¹

This attitude is largely confirmed not only by concerned physicians¹², but also by careful lawyers involved in drafting the texts of various transplantation laws. Thus, the general legal approach concerning organ donation from living donors was to “restrict and more closely scrutinize donations by persons who do not have a close blood or at least a legal tie with the recipient”, the reason being exactly the attempts to avoid commercialism¹³.

However, in his texts, Epstein draws a distinction between “nondirected anonymous living donation”, that he assumes can partially be subjected to commercialization, and “directed living unrelated donation”, as a cover for hidden commercial transactions¹⁴.

This distinction corresponds to the one operated by various hospital programs that approve the former type while rejecting or more rigorously scrutinizing the latter. The main difference is that of letting the organ go towards an anonymous on the waiting list, versus “directing” it – more exactly, designating who exactly on the list (or out of that specific list, for that matter) may receive it. What is purposefully eliminated when an organ is not specifically directed towards a particular recipient is the underlining fear that the two persons may exchange money without formally recognizing it, a supposition that is hard to dismiss even in the case of related donation (and that Epstein does not completely dismiss even in the case of anonymous donation).

Nevertheless, even if the possibility of commercial exchange is removed, there still remain concerns about the mental health of a person who consents to giving up an organ: how could one establish whether the decision was carefully taken, not imposed from the outside and not going to be regretted afterwards? Although the commercial supposition persisted also in the case of Jesus Christians’ directed donations, this second type of objection was mostly present in the discussion. It raised the issue of the possibly manipulative character of their donation, and the extent to which it was a result of the influence of the group’s guru.

The majority of the TV documentaries released on the issue of live kidney donation (not counting the tabloid TV shows such as “Jeremy Kyle show”, that did not have troubles labeling the cult members as brain washed by their religious leader) insisted upon portraying Dave McKay as the overt most influential factor in the decisions of the group, simultaneously presenting the group members attempting to claim the resolution to donate as their own¹⁵. On the other hand, both Dave and the

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other group members dismiss the possibility of “brainwashing” or manipulation and insist upon offering a variety of reasons for donation that can be read in the “ethical/moral” field.

Finally, even if manipulation and coercion could hopefully be ruled out, there is another strand of discussions assuming that informed consent may still be very well, in case of organ donation, a simple myth¹⁶. Authors take into consideration the standard model of providing informed consent – in which an individual carefully balances risks and benefits before finally agreeing to a given medical procedure – and actual narratives of donors’

accounts of their respective motivations, that very often do not fit the standard model. Although many of the narratives that are analyzed belong to related donors, one may wonder if the decision to give up one’s healthy organ for the benefit of a stranger can ever fit the steps of a rational, calculus-based model of the informed consent.

On the other hand, there are different accounts, attempting to prove that the consent offered by a living donor, even it if does not correspond to the requirements of the standard model, is still valid. Thus, it is noted that in family contexts, such decisions are taken most often under the high emotional pressure of coping with a relative’s end-stage disease, and therefore lack the impersonal “benefits vs. risks” calculus that usually govern informed decisions. However, more distant relations (such as the one between strangers) seem to require more “stringent informed consent” and therefore cannot benefit from the “excuse” of related donations¹⁷.

Coming back to the focus of the article - the group of Jesus Christians, although the existence of true and informed consent was questioned in several individual cases involving especially young donors¹⁸, at least there is a piece of material on their website that attempts to provide all donors with evidence of reasonably informed decision. It is an internal piece of correspondence titled “A Letter to Potential Donors” and was written by the nurse-trained wife of one of the first donors from the group¹⁹. Written in non-technical language by an attentive observer, it details the medical process of living donation, paying attention to all the pre and post- operative side-effects, giving a pretty fair estimation of what it is physically like to be a living kidney donor. One can only make approximations of the letter’s usage by the rest of the donors, but clearly the message of the group (by posting it in the main section about kidney donation) is that every would-be donor has at least a basic expectation of what is going to happen during the operation and after, and therefore his/her consent is fact-based.

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Living unrelated donation and the religious arguments proposed by Jesus Christians

An important issue in the economy of this article is: what kind of model are the (religious driven) Jesus Christians for donors from the general public? How do they discursively construct altruism in their acts and how is this Jesus Christians-defined altruism related to other models of altruism as described in the literature (for instance, psychological altruism, or philosophical altruism)? What happens when ethics meets religion via media in a difficult, controversial situation, when no objective rules can be applied and legislation is changing from country to country?

The answer is by no means a straightforward one.

There are two kinds of input necessary for evaluating the impact of Jesus Christian donors as possible models for unrelated kidney donors:

first, their reported explanations or advanced reasons for their acts; and second, the possible reasons for rejecting their acts by the surrounding community. Because their general activity is surrounded by controversy (and the acts of kidney donation make no exception), in order to develop a balanced analysis it is important to have both types of input for assessing their possible impact as role-models.

A sample of the various types of reasons offered by group members (as presented in the media or extracted from the Jesus Christians’

presentation website) for donating organs is summarized in the table below:

Ethically constructed altruism Moral-religious altruism {E1}[Jesus Christians quoted as

allegedly wishing to] ‘make the world a better place²⁰

{E2}[Jeremy Kronmiller, Jesus Christian/Kidney Donor]: "If I could do it again, I would do it again. I see it as a good thing."²¹

{E3}[Susan Gianstefani, Jesus Christian/Kidney Donor]: “Saving someone's life is a logical thing to do when you have something spare.”²²

{E4}[Susan Gianstefani, Jesus Christian/Kidney Donor]: “I have given blood for many years, so the idea of giving something from my body is not new to me. I am on the donor list for bone marrow

{R1}[Dave McKay, Jesus Christians’ founder/ Kidney Donor]:

“...I basically teach them to follow their conscience and to let the teachings of Jesus be their guide...I feel it must be each person's own decision whether or not to donate."²⁷

{R2}[Robin Dunn, Jesus Christian/Kidney Donor]: “During Roman times Christians were thrown to the lions for their beliefs. Our sacrifice is not near as much as theirs.”²⁸

{R3}[Susan Gianstefani, Jesus Christian/Kidney Donor]: “I believe God wants me to use my life to help other people, and the rewards will be a much deeper happiness and a sense of real

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transplants. I have learned that showing love to others makes me happy as well as the person I am loving!”²³

{E5}[Susan Gianstefani, Jesus Christian/Kidney Donor]: “We are all very aware that this is a decision that cannot and should not be made lightly, and if anyone donates under any sort of pressure from others in the community, that would be wrong”²⁴

{E6}“If one in 10,000 people did as he and his Jesus Christians have done, Mr McKay told me, there would be no waiting list for kidneys”.²⁵

{E7}[Dave McKay]: “It’s just something people choose to do because we would like to see people not dying, and it’s so incredibly simple to do”.²⁶

fulfillment in my life”²⁹

{R4}[Susan Gianstefani, Jesus Christian/Kidney Donor]: “Quite a few of us have decided to donate our kidneys to strangers for free, because that fits what the Bible teaches about healing the sick, those who have two giving to those who have none, etc.”³⁰

{R5}“John the Baptist – Mr McKay writes on the Jesus Christians website – when speaking to the crowds who came to him to be baptized, urged them to give proof of their repentance, and he suggested that one proof would be for those who had two to give to those who had none”³¹

{R6}“The Apostle Paul – again on the website – when writing to the Romans, urged them to present their bodies as ‘living sacrifices’, which he added was nothing more than their

‘reasonable service’ to God and others”.³²

{R7}[Dave McKay]: “Jesus commanded his followers to take up their cross and follow his example of sacrificial love”.³³

{R8}[Dave McKay]: “It almost seems to me that God put an extra kidney in there so that at this particular time in history, with the technology we have, he wanted to see what we would do with it”.³⁴

When examining the elements of altruism as defined by Jesus- Christians, we see a mixture of elements, from appeals to consequentialist ethics – {E1},{E4}, {E6}, {E7}, individual psychological factors – {E2}, {E4}, literal and unusual reinterpretations of the Bible – {R1}-{R8}. Jesus Christians’ arguments have as departure point a minimal set of affirmations and biblical presuppositions they interpret literally in order to explain their way of thinking, their living style and their actions. What is surprising is that, among all these elements that build up a way of being in the world, there is the radical novelty brought by the important place of the idea and practice of organ donation. Departing from this literal

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interpretation of several biblical presumptions, doubled by some elements of modern ideology, a new religious ideology justifying the group actions is being constituted. These elements combine into the portrait of a self- determined, hermeneutical-complex, humanitarian-oriented and highly religiously motivated type of person, a kind of a modern-day community saint that is somehow hard to identify with the stereotypical man-on-the- street.

In contraposition, here is a very condensed and fairly decent³⁵ sample of what others say when questioning or rejecting the acts of the group:

Main argument Quote

{Directed against both the donors and the transplantologists}

It is assumed that the doctors know these operations are illicit, but still perform them

Questions the religious basis of the donations, denounces a wrong interpretation of Christianity, without details

Questions the safety of operations for both donors and recipients

Questions the safety of operations for recipients, who may not find out important/ possibly hidden data about donors

Questions the autonomy of group members and their ability to consent

Questions the real interest of the operations (to raise publicity) and the autonomy of group members

Questions the public image of the whole affair

{C1}[Donna Luebke, Registered Nurse]: “They need to investigate what centers do this surgery. It’s a concern to know that these surgeons know who they are and still doing it”.³⁶

{C2}[David Milliken, cult buster]:

“If they believe this is the expression of Christianity, than they got it wrong”.³⁷

{C3}[Dr. Sam Lees, AMA Victorian president]: “he was concerned Jesus Christians cult members were not only putting themselves at risk, but also organ recipients”

“people who were willing to lie about their relationship with the donor could also be lying about diseases that could be passed on”³⁸

{C4}[Ms. Pike] “was concerned that vulnerable cult members could be coerced into giving up their kidneys and might not be in a fit state to understand the consequences of their decision”³⁹

{C5}[The Crofts – parents of Ash Falkingham, Jesus Christian and living donor]: “had previously criticized Jesus Christians’ kidney donations as a publicity stunt engineered by a man who controls what his followers do and say”.⁴⁰

{C6}[Laura Nash, Harvard Business School]: “they create a romanticization of heroism in a way that makes me extremely uneasy”⁴¹

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Assembling these expert-based critiques (nearly all parties quoted may claim expertise in the field they discuss), one gets the controversial image of a delusional, self-interested, easy manipulable and questionably cult-brainwashed individual.

It is easy to see that the two images – the self-projected one and the highly questioning one - are polar opposites, and almost any educated person will be inclined to search for a middle ground between them.

However, what is equally worrying is that the controversial image of these people extends upon and results from their acts of unrelated kidney donation. On various places on their website, the Jesus Christians claim that the general attitude towards living unrelated organ donation is becoming more open (legislatively speaking) because of their acts of pure love. However, their opponents almost symmetrically argue that live organ donation by strangers should be more carefully regulated, and possibly ruled out precisely given that their acts are so controversial.

While this is more likely to be a false dilemma (legislative acts from different countries are hardly reducible to the by-product of disparate acts from two dozens of people dispersed on several continents), it places religious-based living unrelated donation in a delicate position, and only adds to the basic controversies surrounding LURD in general.

Family resemblances of Jesus Christians

Jesus Christians constitute a group that is hard to be included in a category that could be perceived as familiar or that could be identified through the lenses of group belonging. A possible way to approach them is by their inclusion in the generically called “new religious movements”, where they are singled out by the fact that they are situating organ donation as a central religious practice.

More often, those who discuss the Jesus Christians speak of them as a

“cult”, and there are many reasons for using this terminology. However, from an academic perspective, the shortcomings of such a labeling are that, from the beginning, they are defined as something to be careful with, something that may be a potential danger for both insiders and outsiders.

In order to overcome the stereotypes attached to the “cult” label, we prefer to define the Jesus Christians with the help of some family resemblance that could help us understand the phenomenon using some traits they share with other organizations.

Not necessarily denying the “cult” label, we will argue in this part of the article that their religious doctrine would resemble many of the features of religious fundamentalism, such as depicted by Marty E. Martin and R. Scott Appleby.⁴² There are, however, important differences that make unlikely depicting this group as purely fundamentalist.

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Thus, they base their actions and whole way of life to a scriptural tradition they pretend to “literally” apply. This may take the form of interpreting Christ’s words by what they mean – in terms of not valuing one’s possessions, giving away their material possessions when they join the group, working for free, living without money as much as possible.

Then, they distinguish themselves carefully from various enemies that presumably misinterpret their actions and ways of life. The “enemies”

may be represented by anyone that does not fully acknowledge their actions and may infringe upon them in various ways – they range from Police forces to media makers, from worried parents to cult busters, including, among others, transplant practitioners that are unsympathetic to them and unwilling to accept unrelated kidney donation.

When discussing proselytism of Jesus Christians, we have to acknowledge a paradoxical situation: on the one hand, both cults and fundamentalist groups are actively and sometimes aggressively looking for expanding their membership; on the other hand, it may be assumed that the strategies of mass recruiting must at least from time to time be successful. The Jesus Christians deploy a varied and ingenious range of attracting followers, which are especially targeted at the youth: from comic books offered for free to an active website with updated You Tube movies – however, over time, they have been notoriously unsuccessful in raising their membership threshold above 40. Thus, their strategy of proselytism has more or less been one of consolidating the image of an elite group that is not easily to imitate and join.

Many fundamentalist groups share a critique of modernity and its various threats (ranging from individualism, materialism and alienation, to name but a few), while nevertheless adopting more “modern” ways of living and of thinking than their contemporaries. This is also the case of Jesus Christians: since the beginning of their group they adopted different controversial ways of criticizing modernity from throwing money at people, offering to work for free, to filling Sydney with posters labeled

“Sydney, go to Hell!”. However, their interpretation of Christian message is undoubtedly more modern (even postmodern for some) than of other traditional contemporary Christian denominations.

There is, however, one fundamentalist feature which is hard to support in the case of Jesus Christians. Fundamentalist movements show diverse forms of violence: from psychological violence, to the symbolic one or even to acts of terrorism. This is a seemingly absent feature in this case. The donation act cannot be associated with a form of violence, as long as the individual’s state of health is not affected in time, even if the health state is defined as “the complete state of well-being from a physical, mental and social view, and not only the absence of disease or handicap”⁴³.

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Instead of conclusions: organ donation, financial compensations and organ commercialization

One of the resurgent suspicions to be found among the critiques towards the Jesus Christians is that their donation act would not entirely be altruistic. However, arguments or proofs linking their donation acts to a certain conditioning are hard to find. What is left is the tendency to associate organ donation by Jesus Christians with organ commercialization, despite the ethical and religious convictions, as well as their entire way of living that contradicts such a perspective. As previously mentioned in this paper, the issue of commercialization resurges from time to time in the general discussion of LURD. However, given that currently many authors complain about a global organ shortage and that kidney donation in general (LURD together with the other

“classical” options of deceased donation and living related donation) is still hard to complete, a number of them end up by directly endorsing either rather vaguely formulated “incentives-based” or “no disincentives”

formulae or more openly admitted “market-regulated” ways of distributing organs⁴⁴. At the end of this scale, in addition to openness towards organ commercialization, there are several philosophical positions that go even further, by allowing the possibility of compulsory removal of organs from living persons as a radical way of solving the waiting lists dilemmas⁴⁵. We only want to point out here this unusual alternative, without further discussing it, as the compulsory removal of one’s body parts clearly exceeds any ethical framework for approaching living donors⁴⁶.

All these solutions depart from the observation that altruism is not enough, and therefore more substantial and to a certain extent terre-à- terre reasons are necessary to further individuals’ motivations to becoming living donors. What differs greatly is how far one can advance towards this market move, that is at least partially endorsed in the “no disincentives” formula applied in several legislations.

Thus, if organ commerce is still prohibited in various transnational legislative bodies, such as UE, the Transplantation Society, the World Health Assembly, WHO, as well as in most jurisdictions from Europe, North America, South America, Central America, Australia, and several states from Africa and Asia, the same legislations make room for

“compensation”:

“Compensation for what the loss of the material is reasonably worth to the donor appears to be excluded in the above provisions [sanctioning organ commerce]. In principle, they would allow payments that didn’t relate to the material itself, such as for the time and effort of the parties

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involved, along with any legitimate expenses or financial losses (ex. donor’s loss of earnings)”⁴⁷.

There is a considerable difference between compensating someone for what can be proved as a material loss due to the act of donation and reimbursing someone in exchange for her organ, and still the step seems small to the authors arguing for market-regulated organ selling. Here also there are variations between the type of commercial entities designed to regulate the market in organs – ranging from direct buyer-to-seller agreement to various solutions of agencies and bodies that intermediate and prevent buyers to directly contact sellers, but what they have in common is that the money exchange for body parts is deemed permissible⁴⁸.

Also related to our subject, there were some references in different articles about general worries concerning possible hidden commercialization, under the disguise of altruism, and more precise notes on actual compensations (not incentives) of Jesus Christian donors.

However, despite the controversial status of the donors, there were fewer allegations concerning organ commercialization compared to the other questions discussed in the previous section – concerning the mental health, media interest, religious convictions or possible manipulation.

Although commercial donation is the main barrier in relation to the general discussion on LURD, this was only marginal in the questioning of this particular group.

Despite all the controversies, we cannot disregard that kidney altruist donation is a topic of debate involving certain cultural sensitivities that should be taken into account when analyzing social action and symbolic assuming that underscore the ethical, religious, and ideological presuppositions of our culture.⁴⁹

* Acknowledgments: This text was elaborated during the research of Sandu Frunză, Ovidiu Grad and Cătălin Vasile Bobb, supported by CNCSIS-UEFISCSU, project code ID_2265, contract no. 842/2009, “Ethical Expertise and Social Action.

An Interdisciplinary Perspective on Applied Ethics”. The work of Mihaela Frunză was partially supported from a postdoctoral scholarship in the program POSDRU/89/1.5/S/61879, „Studii postdoctorale în domeniul eticii politicilor de sănătate”. A preliminary version of this paper was presented during the 6^th National Conference on Bioethics, Iasi, 17-19 June 2010.

N

OTES:

1 According to UNOS data from August 6, 2010, during the last years the following numbers of unrelated donors were registered in the US (only the categories unrelated “other donors” and “anonymous donations” were taken into account):

in 2007, out of 6043 living kidney donations there were 1359 unrelated/ 22.48%

(1262 other unrelated and 97 anonymous); in 2008, out of 5968 living kidney donations there were 1366 unrelated/ 22.88% (1260 unrelated other and 106

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anonymous); in 2009, out of 6387 living kidney donations there were 1472 unrelated/23.04 % (1331 unrelated others and 141 anonymous); and until May 31, 2010, out of 2417 living donations there were 575 unrelated/23.78% (505 unrelated others and 70 anonymous).

Source: http://optn.transplant.hrsa.gov/latestData/rptData.asp

2 For a fully discussion of the issue, see Carl Elliott, “Doing harm: living organ donors, clinical research and The Tenth Man”. Journal of Medical Ethics 1995; 21: 91- 96. Ever since, numerous authors elaborated studies attempting to indicate various types of possible benefits (more often of a psychological type) felt by those involved in live donation. See Aaron Spital. “Increasing the Pool of Transplantable Kidneys Through Unrelated Living Donors and Living Donor Paired Exchanges”. Seminar in Dialysis, vol. 18 (6), November-December 2005, pp.

469-473.

3 Jacobs CL, Garvey C, Roman D, Kahn J, Matas AJ. “Evolution of a non-directed kidney donor program: lessons learned”. In Cecka JM, Terasaki PI (eds.), Clinical Transplants. Los Angeles: UCLA Immunogenetics Center, 2008, p. 283-291. Quoted in Aaron Spital, “Increasing the Pool of Transplantable Kidneys Through Unrelated Living Donors and Living Donor Paired Exchanges”. Seminar in Dialysis, vol. 18 (6), November-December 2005, pp. 469-473. For comparable studies in Europe, see Willij Zuidema, L.W. Kraneburg, R.A.M. Erdman, M. de Klerk, M.T.

Hilhorst, J.N.M. Ilzermans, W. Weimar. “Living Kidney Donation by Good Samaritans”. In Willem Weimar, M.A. Bos, J.J. Busschbach (Eds.), Organ Transplantation: Ethical, Legal and Psychological Aspects. Towards a Common European Policy. Lengerich: Pabst, 2008, 306-310 (for Netherlands); Annette Lennerling, Fehrman-Ekholm I, Norden G. “Nondirected living kidney donation: experiences in a Swedish Transplant Center”. Clinical Transplantation 22: 304-308, 2008 (for Sweden).

4 Based on various surveys, Spital estimates that the availability of the general public to donate from altruistic reasons could raise as high as 25%, although he admits this is an overestimate. Spital, Aaron. “Increasing the Pool of Transplantable Kidneys Through Unrelated Living Donors and Living Donor Paired Exchanges”. Seminar in Dialysis, vol. 18 (6), November-December 2005, p.

471. An attempt to justify on theological grounds the fact that altruism is the only motivation globally admitted for transplantation may be followed in Sebastian Moldovan, “Organ transplantation and the Orthodox Christian argument for love”, Revista română de bioetică Vol. 7, No. 4 (October – December 2009), 185-197.

5 See Mihaela Frunză, “Ethical and legal aspects of unrelated living donors in Romania”, Journal for the Study of Religions and Ideologies, Vol. 8, No. 22 (Spring 2009): 3-23

6 As organ request is highly above the existing offer, an alternative is using organs from animals. However, existing controversies surrounding xenotransplantation are even more disputed than living unrelated donation, not mentioning the fact that the former is still in an experimental stage. Ethical dilemmas connected to xenotransplantation are found in Mihaela Frunză, “An ethical perspective on xenotransplantation” Revista română de bioetică, vol. 5, no. 1, January - March 2007

7 According to their official webpage, http://www.jesus-teachings.com/, the Jesus Christians have been founded in the 1970’s by Dave McKay and his wife Cherry McKay. They represent a small group of people that claim to live as closely as possible by Jesus’ teachings, by giving up all material possessions at the entrance

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in the group, by living and working together, by refusing to perform classical work (for wages), and rather engaging in philanthropically activities such as learning people from Kenya easy English.

8 An example of openness of medical practitioners towards religiously-driven altruism can be found in the following lines: “Altruism is a legitimate motive for living unrelated kidney donation, and altruistic acts can be based legitimately on religious beliefs”. Mueller PS, Case EJ, Hook CC. “Responding to offers of altruistic living unrelated kidney donation by group associations: an ethical analysis”.

Transplant Reviews (Orlando). 2008 Jul; 22(3):200-5. Epub 2008 May 13.

9 We need not imply that there is a clear-cut separation between the realms of ethics and respectively morality, with ethics being secular-oriented while morality being religion-driven. However, there is an important distinction between a more secularly oriented ethics and a more religiously oriented morality: namely, religious motives and values are more limited in scope and understanding to the respective faith community that cherishes and produces them, while ethical motives and values are more open towards universalization.

Although it is highly debatable whether there could or even should be a universal ethics, ethical values appeal to a wider readership than religious values.

10 Miran Epstein and Gabriel Danovitch, “Is altruistic-directed living unrelated organ a legal fiction?”, Nephrology Dialysis Transplantation 24: 357-360, 2009.

However, the authors carefully mention that the fact that unrelated donation is tainted by commercialization does not imply that every act of altruist donation was a fake: “this real possibility does not entail that altruistic-directed LURD must be a fiction always and everywhere”. 358.

11 Miran Epstein, “The Organ Crisis”,

http://www.project-syndicate.org/commentary/mepstein1/English, 2010/03/26.

12 In another piece of article, Art Caplan also states that most transplants are only done because of transplantologists’ wish to perform more and more transplants at any cost, out of the need of prestige and fame, regardless of the actual needs of beneficiaries.

13 Austen Garwood-Gowers, Living Donor Organ Transplantation: Key Legal and Ethical Issues. Aldershot: Ashgate, 1999, 116. Not all states’ legislations have permitted in the recent past the possibility of organ transplantation from living unrelated donors. Among those introducing caveats or prohibitions, Garwood mentions Germany – where the Act of 5 Nov 1997- section 8(4) restricts donation to relatives of the first or second degree, spouses, fiancées or other persons with whom the donor obviously entertains an especially intimate personal relationship. Similarly, in Costa Rica, Law no. 5560 of 20 August 1974 – section 15, limits the possibility of donation up to the 4^th degree of consanguinity or the 3^rd degree of affinity, or to the spouse. In Portugal, Law no. 12/ 22 April 1993 confines it to relatives up to the 3^rd degree, and similar laws are found in the Russian Federation, France, Italy, Slovenia. For general legal approaches towards transplantation, see also Barry R. Furrow et al. Health Law. Cases, Materials and Problems. West Publishing, St. Paul, Minnesota, 1991; Peter De Cruz, Medical Law in a Nutshell, Sweet & Maxwell, London, 2005; Shaun D. Pattinson, Medical Law and Ethics. London: Sweet & Maxwell, 2006; Herman Nys (ed.), International encyclopaedia of laws: medical law (General editor R. Blanpain), Deventer: Kluwer Law and Taxation Publishers, 2000.

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14 Miran Epstein and Gabriel Danovitch, “Is altruistic-directed living unrelated organ a legal fiction?”, Nephrology Dialysis Transplantation 24: 357-360, 2009.

15 For instance, Jon Ronson’s movie, Kidneys for Jesus, emphasizes Dave’s role as master of puppets who attempts at playing everybody on his hands: the movie maker in the plot of good media vs. tabloids, the young Casey that later has second thoughts, even the faith of one possible recipient, Christine from Scotland, is decided by him, who decides not to recommend to the members the donation.

Ash’s Anatomy, released by Australian TV, also presents the views of Ash’s parents, who blame Dave of controlling the decisions of Ash and of the whole group.

16 Carl H. Fellner, “Kidney Donors – The Myth of Informed Consent”. The American Journal of Psychiatry, 126:9, March 1970, 79-85. This pioneer study on donors’

motivations found, by interviewing a small number of donors (20), that a majority of them reported making the decision to donate either well before rationally considering the alternatives (“in an instant”), or without properly having time to consider whether s/he really wanted to donate (being subject to tests before even considering donation). However, more recent studies confirm the tendency of donors to reach the decision to donate on an impulse, rather than following complicated reasoning.

17 Aaron Spital, James Stacey Taylor. “Living Organ Donation: Always Ethically Complex”. Clinical Journal of the American Society of Nephrology 2:203-204, 2007.

18 Mostly voiced concerns targeted the case of Ash Falkingham, 23, who decided to offer his kidney to Sandy Sabloff. The initial operation in a Canadian hospital was cancelled after his parents complained to the hospital about the alleged undue influence of Dave McKay, and the second operation in Cyprus went approved only after the surgeon invited the parents to the operation theatre, when they finally approve it. The whole process was the object of a two-part TV documentary of the Australian Television, Ash’s Anatomy, and Body and Soul.

19 Chris. “A Letter To Potential Donors”. 23 March 2002. http://jesus- teachings.com/jc-kidney-articles/246-a-letter-to-potential-donors. Such an open information is important in the context when “The medical literature clearly states the importance of communications with patient and family and better information of patient since early disease stages about its clinical condition.”

Florin Mitu, “Physician’s attitude towards end-stage heart failure patient - clinical and bioethical considerations”, Revista de cercetare şi intervenţie socială, vol. 24 (2009):108. At the same time, we have to consider that “health care systems are run by, and address services to people. Consequently, humans are probably the most important but also the most complex resource that a health system has”.

Cătălin Ovidiu Baba, Alexandra Brînzaniuc, Răzvan M. Cherecheş, Diana Rus,

“Assessment of the Reform of the Romanian Health Care System”, Transylvanian Review of Administrative Sciences, 24E/2008, 17.

20 ***. “Give life”. Jerusalem Post, December 30, 2005.

http://www.israelunitycoalition.org/news/article-old.php?id=6558

21 *** “Special Report - Kidney Club” 7 News Boston. 30 April 2008.

http://www.jesus-teachings.com/other-kidney-stories/351-special-report- kidney-club

22 John Higginson, “Saving Lives With Spare Parts”. News Shopper. 30 April 2002.

http://www.jesus-teachings.com/other-kidney-stories/249-saving-lives-with- spare-parts

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23 David Steinberg, “Kidneys and the Kindness of Strangers”. Health Affairs. vol 22 (4):184-189

24 David Steinberg, “Kidneys and the Kindness of Strangers”, 184-189

25 Jeff Corbett, “A Stake In Kidneys”. Newcastle Herald, 07 July 2004.

http://www.jesus-teachings.com/other-kidney-stories/235-a-stake-in-kidneys

26 Joanne McCarthy, “Soul Purpose”. 06 November 2004. http://www.jesus- teachings.com/other-kidney-stories/282-soul-purpose

27 *** “Special Report - Kidney Club” 7 News Boston. 30 April 2008.

28 John Higginson, “Saving Lives With Spare Parts”. News Shopper. 30 April 2002.

http://www.jesus-teachings.com/other-kidney-stories/249-saving-lives-with- spare-parts

33 Joanne McCarthy, “Soul Purpose”. 06 November 2004. http://www.jesus- teachings.com/other-kidney-stories/282-soul-purpose; Dave McKay, “Some of our Beliefs on Kidney Donation”. 06 April 2002. http://jesus-teachings.com/jc-kidney- articles/245-some-of-our-beliefs-on-kidney-donation

34 Joanne McCarthy, “Soul Purpose”. 06 November 2004. http://www.jesus- teachings.com/other-kidney-stories/282-soul-purpose; Dave McKay, “Some of our Beliefs on Kidney Donation”. 06 April 2002. http://jesus-teachings.com/jc-kidney- articles/245-some-of-our-beliefs-on-kidney-donation

35 There are many other accusations, especially in interactive sites such as forums or comments following published articles, that we did not list here because of the shortage of their argumentative level. Merely accuses are to be found on these sites. See for instance: http://forum.rickross.com/read.php?12,10965. A second type of sources we did not particularly used was the one-sided polemics on the site, as groups’ responses to alleged accusations inside the documentaries or TV shows that were aired during the recent years questioning groups’ practices. In contraposition with the first type of source, these were extremely argumentative, highly elaborated and with very many (personal) details. Unfortunately, it is hard to verify what is told in these “reply to critics”, as many details were only anecdotic and did not touch the issue of our focus, i.e., living kidney donation.

See for instance: http://www.jesus-teachings.com/jc-kidneys-for-jesus/255- getting-the-facts-right-part-one, http://www.jesus-teachings.com/jc-kidneys- for-jesus/256-getting-the-facts-right-part-two, http://www.jesus-

teachings.com/controversies/the-jeremy-kyle-show.

36 Jon Ronson, Kidneys for Jesus (2003), video, part 1, available on http://www.youtube.com/watch?v=iu46mCONpks&feature=related.

37 Jon Ronson, Kidneys for Jesus (2003), video, part 1, available on http://www.youtube.com/watch?v=iu46mCONpks&feature=related

38 Tanya Giles, “Cult Push For 'Living Sacrifices'”. Sun Herald. 06 July 2004.

http://www.jesus-teachings.com/jc-kidney-ban-in-australia/309-cult-push-for- living-sacrifices

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39 Tanya Giles, “Cult Push For 'Living Sacrifices'”. Sun Herald. 06 July 2004.

40 Timothy Appleby, “Kidney cult transplant goes ahead in Cyprus”. The Globe and Mail, Canada, Mar. 21, 2008.

http://www.theglobeandmail.com/news/national/article674831.ece

41 Jon Ronson, Kidneys for Jesus (2003), video, part 1, available on http://www.youtube.com/watch?v=iu46mCONpks&feature=related

42 Marty E. Martin and R. Scott Appleby, “Conclusion: An Interim Report on a Hypothetical Family”, in Marty E. Martin and R. Scott Appleby (eds.), Fundamentalism Observed, (Chicago: The University of Chicago Press, 1991), 814- 833. A seminal article on religious fundamentalism is the text of Jakobus M. Vorster,

“Perspectives on the core characteristics of religious fundamentalism”, Journal for the Study of Religions and Ideologies, Vol. 7, No. 21 (Winter 2008):44-65.

43 Cristina Maria Borzan, Floarea Mocean, Sănătatea Publică, (Cluj-Napoca: Editura Medicală Universitară “Iuliu Haţieganu” Cluj-Napoca, 2002), 36. In the case of donors, it is important their inclusion in programs of health promotion that concern the elaboration of strategies for improving the quality of life, for a good mediation between individuals and environment, but also in the strategies concerning social services and orientation towards certain life styles. See these possible strategies in Floarea Mocean, Cristina Maria Borzan, Aspecte de economie sanitară, management al calităţii şi planificare strategică în sănătatea publică, (Cluj- Napoca: Editura Medicală Universitară “Iuliu Haţieganu” Cluj-Napoca, 2002), 10.

See also Antonio Sandu, Oana Mariana Ciuchi. "Affirmative dimensions of applied ethics. Appreciative therapies", Revista de cercetare şi intervenţie socială, vol. 30 (2010): 53-62

44 We would like to mention the authors’ strong reserve towards any attempt of exchanging money for human body parts. Nevertheless, we are attempting to present the range of positions that are covered by this umbrella of marketization in the most objective way.

45 Among the authors endorsing this radical position, we mention Rakowski, Eric.

Equal Justice. Oxford: Clarendon Press, 1993; and Cecile Fabre, Whose Body is it Anyway? Justice and the Integrity of the Person. Oxford: Clarendon Press, 2006.

Although Fabre’s position is more radical than Rakowski’s one, she establishes at the foundation of her argumentation the notion of positive social rights that she previously describes in Cecile Fabre, Social Rights under the Constitution. Government and the Decent Life. Clarendon Press, Oxford, 2000.

46 Even speaking of “donors” seems inappropriate when discussing the issue of compulsory removal, as the mere idea of donation imply the willingness of the person.

47 Austen Garwood-Gowers, Living Donor Organ Transplantation: Key Legal and Ethical Issues. Aldershot: Ashgate, 1999, p. 170.

48 See for instance: Brennan Troyen, “Markets in Health Care. The Case of Renal Transplantation”. Journal of Law, Medicine and Ethics, 2007: 247-255; Ghods, Ahad J.;

Shekoufeh Savaj. “Iranian Model of Paid and Regulated Living-Unrelated Kidney Donation”. Clinical Journal of the American Society of Nephrology, 1:1136-1145, 2006;

L.D. de Castro, “Commodification and exploitation: arguments in favour of compensated organ donation”, Journal of Medical Ethics. 2003;29:142-146.

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49 The importance of the interference between ethics and religion in human development in contemporary societies can be illustrated with the text of Anca Mustea, Oana Negru, Adrian Opre, “Morality and religion: a psychological perspective”, Journal for the Study of Religions and Ideologies, Vol. 9, No. 26 (Summer 2010): 18-35.

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http://www.theglobeandmail.com/news/national/article674831.ece

Baba, Cătălin Ovidiu, Alexandra Brînzaniuc, Răzvan M. Cherecheş, Diana Rus.

“Assessment of the Reform of the Romanian Health Care System”. In:

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Corbett, Jeff. “A Stake In Kidneys”. In: Newcastle Herald. 07 July 2004.

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Peter De Cruz. Medical Law in a Nutshell. Sweet & Maxwell, London, 2005 Elliott, Carl. “Doing harm: living organ donors, clinical research and The Tenth Man”. In: Journal of Medical Ethics. 1995; 21: 91-96.

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http://www.abc.net.au/austory/specials/ashanatomy/default.htm

*** Body and Soul, Australian Story production, 02/06/2008.

http://www.abc.net.au/austory/specials/bodyandsoul/default.htm

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http://www.eastleighnews.org.uk/news/?p=1017

***. “Give life”. In: Jerusalem Post, December 30, 2005.

http://www.israelunitycoalition.org/news/article-old.php?id=6558

*** “Special Report - Kidney Club” 7 News Boston. 30 April 2008.