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2 Body and Thing: Symbolic Law, Friction and Performativity

2 Body and Thing: Symbolic Law, Friction and Performativity

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164



K. Hoeyer



words: “How can this obvious divergence ….be explained?” (p. 350). This chapter

is a step towards an answer to their question.

One option is to consider one of the two types of law less ‘real’ than the other.

Social science critique of the commercialization of the body has chosen this option

by viewing ‘ethics rules’ as merely symbolic window dressing; a veil of economic

exploitation (Dickenson 2007; Scheper-Hughes 2002; Sharp 2007). When conventions and treaties talk about a “body beyond commercialization” and make repeated

calls for educational campaigns to generate willingness to donate body parts altruistically, these scholars see it as a cover-up for the actual underlying economic

forces. Pirnay and colleagues take a similar position, when they note that treaties

aimed at safeguarding the dignity of the body fail to counter what they describe as

the EU’s ‘business oriented’ legislation for tissue and cell therapies (Pirnay et al.

2013). They want to strengthen the protection of the body because “human cells and

tissues (one’s own or somebody else’s) should not be degraded to tradable goods”

(p. 543). The current protection of the body is, it appears, merely a ‘symbolic’ gesture, or what van Klink (Chap. 2 in this volume) identifies as symbolism in a negative sense where the symbolism serves the instrumental goal of furthering business

interests.

In legal thinking, the notion of a symbolic law was introduced with Aubert’s

study of a law which was said to govern the working conditions of Norwegian

housemaids, but which apparently had no effect. Aubert proposed the following

conclusion: “Law may on occasion move in the sphere of symbolism and magic

rather than in the everyday sphere of practical solutions to practical problems”

(Aubert 1966: 115). Later work has questioned the analogy to magic. Van der Burg

and Brom suggest that law brings about interaction through which norms take

shape, and as such even law which is not used to regulate conduct is part of shaping

conduct. Symbolism can work on positive terms by propagating norms which, in

time, influence practice. Though providing few sanctions, symbols are still seen as

having effects. Van der Burg and Brom argue that we should not see such laws as

either reflecting pre-existing norms or as defining new norms for the constituency.

Rather, they are part of generating norms and this works through symbolism as

much as other regulatory means. Therefore, they note,

someone who looks carefully at reality will understand that [legal symbols] are not so much

ineffective as effective in a different way. They are effective in using discussion and persuasion as a means rather than external sanctions and in appealing to morally responsible

behaviour of citizens rather than to merely strategic action of subjects (Van der Burg and

Brom 2000: 68).



The mechanism here alluded to resembles what in the social sciences is typically

thought of as performativity theory. As discussed above, performativity theory suggests that symbols produce action as people enact their world through them: what

people think about the world is part of shaping what the world becomes. People do

not simply reproduce symbols, and it is sometimes unexpected interpretations of

symbols that make them part of everyday practices. Through people’s agency the

symbols themselves may materialize in new ways and acquire meaning and



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tangibility. They are performed in action. In Judith Butler’s seminal work on performativity it is stressed that performative effects are ontological; it is how things

become real, not just some sort of ephemeral symbolism unrelated to ‘real things’

(Butler 1993). The idea is that the world is in a constant process of becoming, and

therefore words such as ‘bodies’ or ‘markets’ are not names of pre-existing universal entities; rather, what we get to know as ‘bodies’ and ‘markets’ emerge through

the agency of people engaged in making them real (Hoeyer 2013).

Importantly, symbols are never free-standing or solitary. They operate in densely

populated spaces with many competing agendas. Hence, people perform symbolism

through interaction with several competing systems of meaning and in reflection of

all the complexity of their material, economic and political options. I suggest that

the co-existence of competing symbols is essential to the performative effects of

‘symbolic law’. I thereby also invite us to approach regulatory initiatives such as the

growth plan and regulatory facilitation of industry access as symbolic. They provide

modes of logic according to which people enact their everyday practices, but they

cannot fully determine what people do. We need to embrace the competing governmental ambitions and investigate what emerges through the resulting friction

(Wadmann and Hoeyer 2014). We cannot elevate one set of legal initiatives to ‘real’

law and reduce another to ‘symbolic’ as if they did not operate in the same world.

In the following, I will discuss the practical implications of having two ostensibly

contradictory policy ambitions (to stimulate a bioeconomy based on bodily products and to keep the body out of the market) based on studies of the everyday practices of tissue exchange in Europe.



10.3



Methodological Approach



This paper builds on several years of fieldwork in and around the agencies regulating and procuring organs and tissue in Europe. Through committee work in Danish

and European associations for organ and tissue procurement I have come close to

the informal discussions about ethics and economics in relation to human biological

material, and I have supplemented these insights with interviews with members of

the European Parliament who have been engaged in developing the complex regulatory framework for inter-European exchange of blood, cells, tissue and organs as

well as members of Danish regulatory agencies translating the EU rules into national

law. Along with this work, I have conducted several case studies, e.g. an interview

study including representatives from all 17 Danish bone banks (Hoeyer 2010), and

also in Denmark, I have with colleagues interviewed health professionals working

with organ procurement as well as potential organ, tissue and dissection donors

(Hoeyer and Jensen 2013; Hoeyer et al. 2015). I have also travelled to several major

European tissue banks to understand the impact of the European regulation in different constituencies.

In this chapter, I draw mostly on material from three very different European tissue banks. Tissue banking is a small world and two of the three were very strict on



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K. Hoeyer



the need for absolute confidentiality. In the following I have therefore covered their

identities by giving them new names; avoiding reference to the countries in which

they operate; and, in one instance, by attributing a different type of tissue to its portfolio. The three banks represent different organizational forms: Quality Tissue Trust

is a public multi-tissue type procurement facility which harvests material from bodies originating in the national jurisdiction while delivering tissue grafts globally.

International Eye Bank is a privately established mono-tissue type procurement

facility which was established by health professionals from several countries, using

their own money for start-up capital. It receives tissue from donors in several countries and it ships tissue world-wide though mostly in Europe. It is embedded in a

public facility and its price setting is carried out by the national authorities in the

country where it is located. Finally, VitalGrafts is multi-tissue type procurement,

research and distribution bank, which harvests cadavers nationally, but ships grafts

internationally. It is affiliated with public health authorities. I have interviewed

managers, doctors and one secretary from these facilities. In some instances, I was

not allowed to record the interview and the direct quotes from these interviews are

quite short and limited to what I could make a note of while interviewing. The urge

to avoid electronic recording is in fact indicative of the type of environment in

which these tissue bankers operate, and as such it illustrates the governmental frictions these biobankers need to handle on a daily basis, as I will now show.



10.4



Ethics and Economics: “A Very Strange Sector”



It is about 10 min into a conversation with the manager of VitalGrafts that I reach a

point where I think it is appropriate to ask if I may record the interview. He looks

hesitant and then says that it would be better if we could keep it ‘informal’. He

explains: “It’s a very strange sector! And it’s a small world with a high emotional

level.” I ask him what he means by ‘strange’, and he replies that as tissue bankers

they “have to balance ethical with economic aspects”. When visiting the International

Eye Bank, it took an hour before we had reached levels of confidence sufficient for

the manager to allow recording of the remaining one and half hours of our conversation. He said that journalists would often want to write about tissue recovery just to

provoke a sense of horror and it was important to protect their bank from negative

publicity. It is a strange sector indeed, if we consider how practitioners in the field

wish to protect themselves against publicity and yet simultaneously agree on a need

for educational campaigns and increased awareness.

What is this ‘strangeness’ about? At the end of each interview, I asked every tissue banker “What are in your opinion the major ethical issues in tissue banking?”

They all pointed to the balancing of ‘ethics’ and ‘economy’ mentioned by the manager of VitalGrafts above. Two staff members from VitalGrafts interviewed together

responded in chorus to my question: “commercialization!” Then they began elaborating on a need for public guidelines on legitimate purposes (should they, for example, deliver material for cosmetic enhancement?); how should they balance requests



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from the research industry with requests from hospitals (“many people want to do

research with this tissue, and it is difficult to see if it’s all covered by ‘research into

transplant purposes’”); and, finally, “The ethical issue is how to respect donors’

intentions in terms of tissue usage and ensure transparency”. The responsible doctor

in International Eye Bank responded to the same question saying:

In my opinion, tissue banking must be non-profit, absolutely, the, the… in different senses

we may not sell the tissues, we may cover our costs and the tissue banks must remain very,

very strictly eh.. controlled, in the sense of who would use the tissues, for which, which

purpose the tissues can be used.



Again he points to a balancing of ethics, donor control and economic concerns as

the major ethical issues, and while doing so, he illustrates the difficulties in finding

a language adequately expressing both these concerns and the nature of the transactions that do take place. Respect for donor wishes also came across in an interview

with a doctor from Quality Tissue Trust, operating in a country which has a presumed consent rule for organ recovery, but not for tissue recovery. She thought for

a while about the ethical issues and after mentioning concerns about some procurement agencies being too focused on procuring a lot of bodily material for economic

reasons she then decided that it was not economics as such but consent that was the

major issue. I asked why consent was important and she replied:

…because I think that the world of transplantation is not perfect. It is not one hundred per

cent perfect. And it is important that the consent has been done without pressure. And if the

consent is well done, the security and the safety of the tissue and organ is well, or better.



Note that as she shifts from concerns about economic incentives for procuring too

much to concerns about consent, she builds a bridge to another main concern,

namely safety. If the informed consent is not in place, proper investigation of the

medical history is impossible. In practice, economics, medical safety and ethics

belong to interrelated registers, and though subject to different legal initiatives, tissue bankers need to address all of them concurrently. For people working with

cadaveric tissue recovery, the concerns about economy, ethics and safety all

converge.

If ethics, safety and economics converge at the practical level of tissue banking,

it is interesting to note also how policymakers seem to slip from topic to topic. One

of the first things which struck me when moving around the EU offices was the

ways in which discussion about directives said to govern safety inevitably glided

into comments about ethics. Even specific questions about technical standards could

somehow lead to reflections on informed consent and ‘voluntary and unpaid donations’. Of course, this reflects also the fear of the gaze of the outsider, the interviewer, but this fear is part of the everyday context for their work.

In one particular instance, a legislator identified this moving back and forth

between economic considerations and ethics talk as a clear mistake. I had noted that

the directives implied increased expenditure and I therefore (naïvely) asked a member of parliament whether they had discussed the economic implications of the

directive when preparing the organ directive. He quickly corrected me: “No, we’re

looking more to principles, for example safety, that it is unpaid and voluntary,



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