Despite this objectifying language that portrays organs as spare parts, reciprocity in the form of financial incentives has no place in the practice. The donors strongly reject the idea of financial incentives based on a fear of bodily commodification, which they believe will lead to exploitation.
Thus, the donors erect boundaries between the practice and financial incentives by viewing the two as hostile worlds. The understanding among the donors is that financial incentives are incompatible with the altruistic values that guide them, thus the practice would lose its legitimacy and some carriers would leave.
While helping others is the primary motivation for joining the practice, it becomes just as much about consideration for the social ties with the family. Consideration for the family is a general trait in the practice which is performed in many varieties. One donor has exempted organs from donation for the sake of his family, but the most important variety is whether the donation is made contingent on the family’s acceptance or not. Some donors find it most considerate to leave the family with the final say, while others believe that it is better to decide for yourself. Either way, the donors’ decision is guided by a desire to protect the family in a time of crisis and minimise their sacrifice. All donors furthermore agree that making a decision on organ donation is a prerequisite for a good death. Framing organ donation registration as an act of consideration for the family thus holds potential for policy makers.
The consideration for the family is most often taken without actually talking to the family, and generally, organ donation is not a topic that is discussed with neither friends nor family. Nor is it something donors think about after they have registered. While donors say that it is not a difficult topic to talk about, it is nonetheless hidden, thus making it a weak taboo. Some donors experience organ donation as a strong taboo in conversations with people outside the practice, especially children and significant others. The reason for this is that you cannot talk about organ donation without talking about your own death.
An inherent trait in the practice is that organ donation should be voluntary; no one should be pressured into donating their organs. Everyone should however decide, and it does not matter if you donate your organs or not. One donor considers being an organ donor a civic duty. He is also in favour of introducing preferential status, which other donors flatly reject. A common understanding within the practice is that registration is influenced by the status quo bias, meaning donors believe that people want to become organ donors but do not get around to registering.
Therefore, the majority of donors are in favour of presumed consent. Two donors are however concerned about maintaining autonomy, which makes them prefer mandated choice.
As shown in this conclusion, researching organ donation as a social practice has revealed many aspects and nuances. Among these are the considerations made by the carriers, the meanings they infer into the practice and the competences required to do so. Distinctions and similarities between the findings and current research have furthermore been identified in the thesis, thus the aim of contributing to a more nuanced understanding of organ donation has been achieved.
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Appendix A: Interview Guide
Introduktion
Mit navn er X - og jeg er studerende ved Copenhagen Business School og er i gang med at skrive et speciale om organdonation i Danmark.
Vi undersøger organdonation i Danmark og hvordan folk forholder sig til organdonation. Jeg vil ikke sige mere om dette nu, men hvis du har nogle spørgsmål efterfølgende, vil jeg meget gerne uddybe nærmere.
Inden vi går i gang, vil jeg sige, at der ikke er nogle rigtige eller forkerte svar. Jeg er bare interesseret i at høre, hvordan du forholder dig til emnet.
Jeg vil gerne have lov til at optage interviewet, så jeg efterfølgende kan transskribere det. Hvis du er interesseret, må du gerne høre det og læse analysen, når vi er færdige med opgaven for at sikre dig, at det du siger ikke er blevet misforstået eller fejlfortolket.
Alt hvad du siger er selvfølgelig anonymt. Vi giver dig et pseudonym i opgaven.
Som udgangspunkt kommer vores vejleder og censor til at læse opgaven, men den bliver også gjort tilgængelig i CBS’ database over specialer.
Har du stadig lyst til at deltage? Hvis du på noget tidspunkt i løbet af samtalen ikke har lyst til at fortsætte, så sig til, så stopper jeg optagelsen og interviewet
Har du nogen spørgsmål, inden vi går i gang?
Interviewperson
• Køn: spørg ikke, men noter selv ned
• Alder?
• Hvad laver du til dagligt?
• Vil du betegne dig selv som religiøs?
• Hvor længe har du været organdonor?
• Kan du fortælle mig om dengang, du besluttede dig for at registrere dig som organdonor?
o Hvornår?
o Hvorfor?
o Hvordan?
• Kender du nogen, som har doneret eller modtaget et organ?
o Hvis ja, kan du fortælle mig om det?
• Er du bloddonor?
• Er du sæddonor? / ægdonor?
• Kunne du forestille dig at blive det? Hvorfor / hvorfor ikke?
• Har du et testamente eller har du gjort dig nogle tanker om, hvordan du gerne vil herfra?
Kommentar:
Det ovenstående spørgsmål blev tilføjet efter det fjerde interview, hvori respondenten fortalte, at hun havde oprettet et testamente. Vi inkluderede det for at undersøge, hvorvidt dette var en gængs praksis blandt organdonorer.
Registrering
• Hvilke tanker gjorde du dig inden du registrerede dig?
• Hvordan registrerede du din holdning?
• Hvordan har du det med måderne, man kan registrere sig på i Danmark?
(online, dialog med familien, donorkort)
• Hvilken form for tilladelse har du givet?
(fuld / begrænset / ved ikke / nej) o Hvorfor denne tilladelse?
• Snakkede du med din familie, venner, netværk inden du registrerede dig?
• Har du efterfølgende snakkede med din familie og venner om organdonation og din beslutning? Hvordan det kunne påvirke dem?
o Hvorfor / hvorfor ikke?
• Har du på noget tidspunkt lavet ændringer ift. tilladelse?
• Er det noget, som kunne få dig til at genoverveje organdonation?
o Hvis ja, hvad?
o Hvis ja, hvorfor?
• Er organdonation et svært emne at snakke om?
Framing
• Hvis du skulle beskrive organdonation for nogen som ikke ved, hvad det er, hvordan vil du så beskrive det?
• Hvad er dit indtryk af måden organdonation bliver italesat på?
Medier
• Har du set nogle kampagner for eller mediedækning af organdonation?
o Hvis ja, var det før eller efter du blev organdonor?
o Hvis ja, hvad synes du om mediernes dækning af organdonation?
• Var det i forbindelse med en kampagne eller mediedækning, at du registrerede din holdning?
• Møder du organdonation på de sociale medier?
• Hvordan vil du have det, hvis den virksomhed du arbejder for aktivt gik ind og opfordrer medarbejderne til at lade sig registrere i organdonorregisteret?
[forklar ’Giv Livet Videre Stafetten’, http://www.givlivetvidere.dk/stafetten/]
• [Vis dem kampagneplakaten, vedlagt nederst i interviewguiden, for ’Giv Livet Videre’ og forklar kort, at det var en del af en kampagne, som skulle få folk til at tage stilling ved at opfordre folk til at registrere sig og efterfølgende tegne et ar på kroppen og ligge det op på de sociale medier]
o Kunne du finde på at deltage?
Organdonationssystemet i Danmark
• Hvad ved du om organtransplantationssystemet og hvordan det virker?
• Hvad ved du om selve transplantationen og hvordan den foregår?
• Har du tillid til systemet?
• Hvordan vil du have det med at indføre finansielle incitamenter i forbindelse med organdonation?
• Hvad med finansielt tilskud til begravelsesomkostninger?
Kommentar:
I de to første interviews, Mike, 23, og David, 67, var de to ovenstående spørgsmål slået samme til ét. For at få respondenternes umiddelbare reaktion på indførslen af finansielle incitamenter valgte vi dog efterfølgende at dele spørgsmålet op i to separate.
Forskellige tilgange til samtykke
• Kender du til debatten om formodet og informeret samtykke i forbindelse med organdonation?
o Hvis ikke forklar så kort og præcist, hvad det vil sige:
Informeret samtykke - her skal enten den afdøde selv eller dennes pårørende have givet informeret samtykke til donation, før man kan benytte organerne til transplantation.