Although a full commercialization of organ procurement is rejected throughout all focus groups, the language of commodification, instrumentalization and exploitation seems to be densely interwoven with many argumentative threads of the discussion. Several participants refer to organ extraction as "harvesting" [Mr. N., NED_lay], "disemboweling" [Mr. M., GER_lay] or as taking out of "spare parts" [Ms. C., SWE_lay]. This imagery hints at the relevance which background conceptions of self and body already have for attitudes towards organ transplantation in general and not only for the commercialization of organ procurement in particular. Thus, the agricultural image of a field which is harvested might tend to elicit different answers to the question as to what should be permitted than the mechanistic imagery of the body as some piece of machinery with replaceable parts might suggest . In the following section, the main types of images and conceptions of self and body which appeared in our focus groups will be described and explored with respect to their interdependence with attitudes towards organ donation as such and the commercialization of organ procurement in particular.
"Just like cars": the body as private property
Many participants in all focus groups attach great importance to the idea of personal autonomy. For most of them, this idea also comprises bodily self-determination in the sense that one has the right to freely dispose of one's own body. In the context of organ transplantation, this right plays a crucial role when it comes to decision-making processes. Thus, a Dutch speaker would "start from the point that I have 100% self-determination over my own body" [Mr. N., NED_lay]. And a speaker from Cyprus declares: "What I will do with my body is my own business." [Mr. A., CYP_lay]
On closer examination, two different conceptions of bodily self-determination seem to present themselves. The first one is premised on the idea that no other person may make any claims with respect to one's own body or is allowed to interfere with one's decisions concerning it. In the group discussions, this "defensive" aspect of bodily self-determination is stressed when it comes to the question as to whether individuals have any responsibility or obligation to donate, be it towards the family or society at large. In these contexts, bodily self-determination is widely and vehemently postulated as "the right to refuse" [Ms. Q., NED_lay] donation, or, as these Swedish speakers put it: " [T]hey do not have the right to take my organs if I do not want them to." [Mr. B., SWE_aff] "No, it must happen by free will." [Ms. W., SWE_aff]
However, the mere absence of third parties' claims to my body or its parts does not necessarily imply that I myself am entitled to freely dispose of it as I wish. After all, there may still be limits to my bodily self-determination based on religious or "philosophical" considerations (see below). Thus, a German speaker who vehemently stresses the right to refuse donation also states: "I have problems with transplantations anyway because I believe ... that we can't prolong life artificially and just for kicks, or replace or manipulate it, because life as such ... has another sense than immortality" [Mr. U., GER_lay]. In this respect, the second conception of bodily self-determination goes much farther, the postulate being that one has an unrestricted right to actively do with one's body whatever one likes. In the focus groups, this "empowering" aspect of free choice and self-development in view of one's body primarily comes into play when future technological scenarios such as enhancement or infinite organ replacement are discussed and assessed:
" [...] as long as it remains your own choice – referring to what you said about getting new livers again and again while your mind wears away – as long as it remains your own choice whether you get a new liver or not then in my opinion there is no problem. When at a certain point you say: well, I am seventy years old, all this is not necessary for me, let me just await my own time, then isn't that just fine? [...] But if somebody else DOES choose to lengthen his life with new organs again and again, I think it is up to him." [Ms. R., NED_lay]
In the group discussions, the idea of bodily self-determination is frequently addressed in terms of ownership. The notion "that [...] my body belongs to me" [Mr. I., GER_lay] appears to be deeply rooted in everyday intuition because it is often presented as a consensual and nearly self-evident point requiring no further justification, as a Dutch speaker's argument against obligatory donation shows. As he says: "Everybody owns his own... has the right to dispose of his own body... It's my body." [Mr. N, NED_lay]
This idea of bodily self-determination in terms of ownership seems to bring the human body in line with other pieces of private property. On closer inspection, however, the application of this ownership paradigm does not necessarily imply approval of commercialization in the sense of making money with one's body or its parts. On the contrary, money often seems to be perceived as a factor which has the potential to impede self-determination by corrupting persons and distorting their own proper will, that way inducing them to do things they would not do otherwise. Thus, the autonomy and authenticity of decisions concerning the body can be called into doubt when financial motives are involved since this is seen as "something different than voluntary registration" [Ms. D., NED_aff]. Against the background of similar considerations, German participants discussing the obligatory psychological test in the case of living donation even compare financial incentives with other constraints on the freedom of decision such as psychological pressure in the family context.
On the other hand, arguments for bodily self-determination do show a certain affinity to a particular kind of body conception. Thus, especially when discussing the pros and cons of a future scenario in which self-preservation through infinite organ replacement becomes technically feasible, the participants frequently employ images from the sphere of handicraft or engineering which suggest analogies with the reparation of machinery in order to address and articulate their position: "It actually will be just like cars: Well, gosh, the radiator is broken or won't live long: out with it, put a new one in." [Mr. N., NED_lay]
Such descriptions of the human body within the framework of a mechanistic paradigm show a certain tendency towards accentuating aspects of functionality and performance when describing the body and its parts. These aspects are usually also described in terms of mechanistic and technological images such as automobiles, comparing organ transplantation to "fixing a car" [Ms. E., CYP_aff]. Such is the case in this statement made by a participant from the Netherlands:
"I have got 'Mercedes'-lungs. I had an argument with my physician: I want 'Mercedes'-lungs, or else I want to die. I mean it, I really said it like this. I have got 'Mercedes'-lungs, I don't want a 'Lada'. And then it was: Mrs. V. – I have got 'Mercedes'-lungs for you. Let's say it like this..." [Ms. V., NED_aff].
This mechanistic focus on functionality and performance seems to correspond to a tendency to relativize all other aspects of the body and thus to regard it like a mere "commodity". Hence, in discussing the provenance of a donor organ, some participants almost exclusively discuss the functional capabilities of the organ, explicitly denying that any other features (artificial/organic, human/non-human, living/dead, male/female) play any role. Moreover, from this perspective, organs are bereft of any symbolic meaning and do not have any significance for the person, the sentiment being that "only the mind can change somebody, the parts do not change a human being." [Ms. O., CYP_lay]
This disregard of all aspects except for functionality and performance certainly plays no small role in the fact that mechanistic body conceptions generally tend to promote quite a positive and optimistic attitude towards the technological possibilities of modern biomedicine, as is expressed in this statement from the Swedish group:
"So, one should probably not have an altogether negative attitude towards this [an overall replacement of organs]. Since it can easily become, as we said, like science fiction, let us replace this, let us replace ...that. Just like when you take your car to the garage, it is coughing and such, yes, let us replace that and fix that and then you are off again." [Mr. B., SWE_aff]
"The human being is not a car": the body as part of a larger order
On the other hand, some lay people and patients in all four European countries also point out several limitations to autonomy and the free disposal of one's own body. One of these limitations arises from the belief that the body is not merely a piece of machinery with replaceable components, but an organic entity with its own intrinsic structure and dynamics which resist external interventions.
"But a human being is not a car." [Mr. F., NED_lay] "No. That's right. It's being loaded just as heavy, but it is not a car." [Mr. N., NED_lay] "And what do you mean by that?" [Moderator] "Well, a car: that is material, it doesn't talk back, though it does wear out too... but well, a human being is just something really different, a lot more sensitive too... well, how do you express that. It is not a thing, it is... well." [Mr. F., NED_lay]
In contrast to aforementioned mechanistic ideas, this more organicistic conception is rarely ever articulated in a direct and positive manner. This means that instead of explaining their conception of the body by means of explicit terms or images, the respective speakers often tend to address it indirectly, that is, by negating and rejecting mechanistic descriptions. Nevertheless, these conceptions of the body seem to have important implications for peoples' views and attitudes. They often correspond to a reluctant, skeptical stance towards science and the conviction that there are moral limits to technological possibilities. Especially when moral directives cannot be derived from the principle of self-determination, e.g. in the case of proxy decisions for deceased relatives, the conception of the holistic or organic nature of the human being and its body is brought to bear as a moral orientation which even has the potential to override relatives' presumptions:
"Well, if there is no decision, I mean it is clear that nothing should be taken out. I mean this is crystal clear. Because a human being as such is not a spare parts store. Well, for me, this wouldn't be ethically [Mr. M, GER_lay KNOCKS ON THE TABLE.] acceptable at all." [Mr. U., GER_lay]
This sense that certain limits are given can be related to the idea that nature itself has some sort of intrinsic, self-contained order that sets limits to all human interventions. In part, this notion is based on the religious image of nature as divine creation. Thus, under the premise that the human being was created by God and embodies divine will, one Dutch speaker interprets the body in a teleological manner as "a creation with a goal" [Mr. F., NED_lay].
On the other hand, the insistence on limits which is associated with organicist views is sometimes embedded in the non-religious idea of a natural order of things, which imposes certain limits on human action and invests human life with certain aims. This conviction often manifests itself when speakers refer to nature or natural entities like the body in a moral line of argument or qualify interventions in moral terms, calling them "natural" or "unnatural."
Such underlying notions of a natural order are sometimes accompanied by the conviction that one has the responsibility to leave the body as it is and instead adapt one's own behavior or way of life to the conditions set by one's natural bodily constitution. Thus, the aforementioned German speaker continues, saying that "I have no right to change my body in a way that I change parts there. Well, if it no longer functions, I will have to find a way to deal with the consequences of that, that is to say to deal with it without operation" [Mr. U., GER_lay]. And a participant from the Dutch group seems to proceed from the idea of a divine natural teleology in which everything that occurs has a function:
"I think you have been created for good reason, with two kidneys." [Mr. F., NED_lay] "You have a kind of back-up inside." [Mr. N., NED_lay] "Yes." [Mr. F., NED_lay] "You shouldn't start fiddling with people in this respect. See, those things are there, you are born like that and they have a function. Why do you have two, why not one?" [Mr. Y., NED_lay]
In this line of thought, the body is often perceived less as a passive, irresponsive object which is separate from the self than as something more or less congruent with the person as such. One way to conceptualize this monistic intuition of an embodied self is to speak of the body as an instance with its own inherent "authority" or "wisdom" which can influence a person's attitudes, behaviors and lifestyles:
"I guess there are also signs somehow from your body, that, in a way you can't continue your life-style or something like that ... No idea, if you smoke. Someday you'll get, everything doesn't look like it should be anymore or so. I think all these things are hints and challenges, which will help you in a way to find out what to change, and that you can change it, and that it needs to be done." [Ms. G., GER_lay]
Such monistic conceptions can have a great impact when it comes to attitudes towards organ donation. Thus, they seem to promote the idea that (a part of) the donor lives on in the body of the recipient via organ transplantation. As this affected speaker from Cyprus explains, if body and soul are – more or less – congruent, then a transfer of physical parts can appear as a transfer of portions of one person to another:
"I would know that a part of my child would breathe and live in another body and I would have a part of my child in life. Apart from saving a life, a part of child, either an eye or a kidney or whatever, would be alive." [Ms. E., CYP_aff]
The notion that (a part of) the donor lives on in the recipient via organ transplantation makes it difficult to view or treat organs as fungible commodities. Thus, many speakers speculate as to whether attributes of the donor "may be transferred to somebody psychosomatically and change a person." [Mr. H., CYP_aff] Although such considerations are often articulated in a slightly facetious manner, they still play a major role in discussions, especially for the affected people. Attributes which are considered to be potentially transferable are e.g. character traits, preferences or aversions, talents or even hobbies:
"I would like to say something I read in a newspaper seven years ago in Canada. A woman received a kidney from a deceased donor. When she went home she wanted to have a beer and a hamburger everyday at lunch time, something that she never did in her life. Thus, she wanted to find out who the donor was. She discovered and the donor used to do this everyday at lunch time..." [Mr. K., CYP_aff] "So, these things are transferred." [Mr. H., CYP_aff]
"The brain makes us special": meaningful organs
The aforementioned complexes of self and body conceptions do not constitute two distinct, monolithic blocks. There are contradictions within the camps and floating boundaries between them. Thus, within the dualistic framework of the property paradigm, the brain often receives a specific status. It is identified as the physical basis of a person's mind, its anchorage in the body, so to speak, and thus the locus of personal identity. In this perspective, the brain consequently marks a logical and technical limit of bodily self-determination since it accommodates the self itself: the subject of self-determination.
"There is one single organ that of course cannot be replaced – that's the brain. That's what makes us special. If we did replace it, in reality we actually wouldn't replace the brain, rather we would give the brain a different body. Since it is the brain that makes you a personality. Other than that I'm in favor of replacing all organs as soon as this can be done technically, biologically." [Mr. S., GER_aff]
Interestingly, one Dutch participant also holds that the genitals should be excepted from transplantation because he regards them as relevant for personal identity, as well, due to progenitory considerations:
"I think there are two organs that certainly shouldn't be transplanted and those are the brains and the genitals. Because I think they do influence who you are. Brains definitely, I think that you become a wholly different person. Namely the other person. They can not do it [now], but if they could. And with the genitals – you do not beget your own children, but someone else's, suppose you would undergo a transplant as a man. So that's ... not even allowed." [Mr. T., NED_aff]
Eventually, in one Cypriot group, a discussion about the status of the eyes evolved, indicating that some participants also consider them as relevant to personal identity. In this context, the special status of the eyes is not based on their visibility, alone; they are rather described as a kind of gateway to the person's inner self:
"Ms. X. has said something earlier. That is, "I think it is better if the eyes of the child live..."" [Moderator] „Not only the eyes. But the issue of eyes has impressed me because I had heard about such a case in the past.” [Ms. X., CYP_lay] "Would it be remarkable because we see the eyes whereas we don't see the liver or the kidney?" [Moderator] "You see the person through the eyes" [Ms. O., CYP_lay].
The view that the brain has an exceptional status has significant consequences for an evaluation of organ transplantation in at least two respects. First of all, it establishes certain reasons for accepting the occurrence of brain death as marking the death of a person as such. If personal identity is an exclusively spiritual phenomenon which is based on brain functions but detached from the rest of the body, an irreversible breakdown of brain functions simultaneously marks the death of the person as a whole, leaving only a "living body":
"I think that the body may be still alive but to me this person would be dead.... perhaps I may not say that he/she is dead, perhaps I would say that the body lives and therefore I would kill it by myself in order to take the organs and give them to somebody else... because the body lives. But in this case I would perhaps say that "yes, I have no problem" because I would give life to other people. Perhaps I would take life by myself but I would give it to other people because I would know that it was over." [Mr. L., CYP_lay]
Secondly, on the basis of the notion that the brain has a particular status, several speakers, especially in the groups of lay people, also strictly reject any speculations about the possibility of transmitting personality or personal characteristics through transplantation of other organs, since " [p]ersonality does not come with the heart." [Ms. P., SWE_lay]:
"But it is a technical organ, I mean, someone's hobbies don't reside in his kidney. Perhaps it resides in your brains, but my kidneys don't indicate that I love sport. At the utmost they have been influenced by that, that perhaps they are in better shape, but that implies only their technical state. And that could perfectly fit in someone else's body." [Ms. Z., NED_lay]
A transplant receiver from the Dutch group who declares that he is „not so sensitive to what I will disrespectfully call "ghost stories"” (i.e. personality-transmission narratives) even offers an alternative, exclusively naturalistic explanation referring to
"...the physical phenomenon that a tissue has a certain dependence on a certain substance, you know your 'tostis', and that the desire comes with that. ..." [Mr. J., NED_aff]
Interestingly, in the course of the discussion, the selfsame patient also states that his down-to-earth naturalism might be a coping strategy to avoid emotional stress. This stress could be induced by thinking about "his" organ donor and "to protect myself from that, also because I'm afraid I would get too carried away" [Mr. J., NED_aff].