THE BALANCE: A RESPONSIBLE USE OF AUTONOMY
One possibility is to rank the values discussed above, and to say that the value of public good should prevail, or the other way round. In this way, one set of values will necessarily be sacrificed. An alternative way of looking at the problem is how to combine these values, rather than how to rank them. I will now show that trying to combine these values is a better alternative than either, on the one hand, relying purely on individual judgement or, on the other hand, considering the dead body as a republic.
In order to combine these values, the state could promote a responsible use of autonomy. Whereas clearly autonomy is not an absolute right, it is desirable that people use it responsibly. In most democratic societies, it is in fact accepted that the social good should be sought while minimising intrusions in individual autonomy.49 In the case of tissue and organ donation, the state may invite, or require, its citizens to make a responsible choice on the matter. A responsible choice is one based on information, education, and consideration of the reasons for acting in one sense or the other.
The issue of "death", instead, is seldom openly discussed in public settings. Psychological and anthropological studies show that in Western societies death is a taboo.50 Consequently, people often come across the issue of organ retention only when they lose a close relative, and, minutes after death, they are asked to make a choice about the deceased’s body.
The complete absence of public information on the topic was striking in the Alder Hey Hospital scandal. People had no idea what procedures had been carried out on their children, what "tissue" meant, what these "tissues" were retained for, why they were often stored and not utilised.51 Some parents said: "If those organs had been used I would have been pleased but they hadn’t and it has devastated us".52 Comments such as these indicate that these parents were not familiarised either about the practice of or about the importance of retention of tissues for medical sciences. And interestingly, some parents said they would have donated their children’s organs, if asked and informed.53 As Margaret Brazier said: "About three years ago I got my donor card out and it was looking tired and tacky. So I needed to put myself on the National Donor Register, but I thought to myself ‘is there any point in this? My 50th birthday is approaching ... : who is going to want to use your organs for transplantation?’ It never occurred to me then that there might be all sorts of other beneficial uses that ... my organs could be put to. That is the message that has to be got across".54
The reluctance to talk about death affects post-mortem choices in many ways. It affects individuals, who, understandably, may be reluctant to consent to practices they are unclear about and for purposes that are often obscure. It affects professionals, who often feel that the topic is one that "will distress" the relatives—one that needs to be silenced. It affects the relatives, who are caught unprepared and are asked, sometimes at the most difficult time of their life, to sign formulas that mean little to them with no time to think through the meaning and importance of what they are being asked to do.
People may refuse to donate their organs or their relatives’ organs because of beliefs that need to be corrected or at least analysed (for example, that the person "may wake up" again or that the person may "perhaps feel pain"); or because they have not thought through the issue sufficiently; or because they do not want to consent to medical practices they do not know enough about.
There is clearly a strong public interest in increasing availability of organs and tissues, but rather than including dead bodies among its properties, the state may consider:
- correcting people’s false beliefs
- promoting public information
- encouraging clear discussion of the usability of corpses for medical and scientific purposes
In practice, this may mean including education on the topic in schools and universities, and/or provide clear information to the general public about what is involved in post-mortem tissue and organ retention—for example:
- Why it is important for science (for example, which medical advances have been gained through the study of samples taken from cadavers)?
- Why it is essential for saving lives?
- How pathologists work and why organs and tissues are often stored in banks rather than being directly utilised?
- What is meant by "tissues"?
This may have a profound impact on the way people articulate death and think about the importance of organ and tissue donation for transplantation and research. Once informed, people can be asked to make a clear choice. By asking to make a choice the state would not frustrate, but, on the contrary, would encourage a responsible exercise of autonomy, and, at the same time, it would promote recruitment of organs and tissues. A few countries have already adopted this policy, and in some cases this takes the form of a contracting-out policy—that is, people are asked to sign a card if they do not wish to become donors (for example Belgium). In New Zealand, people are required to complete a donor’s card if they want a driving licence.55 This type of state intervention has proved to be highly successful. In countries where people are required to express their preference there is much larger availability of organs and tissues.56
Instead of considering the body as a part of the republic, availability of organs and tissues could be increased through a ponderate and responsible choice. Thus we may promote the interests of the society and save many lives while encouraging the exercise of individual autonomy. We may thus avoid altogether the invidious situation of having to decide which value or sets of values should prevail.
ACKNOWLEDGEMENTS
The author wishes to thank John Harris, Margaret Brazier, Julian Savulescu, and Steve Lambert for the discussions they had with her about the topics in this paper.
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