Abstract
Two ways of understanding the notion of autonomy are outlined and discussed in this article, in order to clarify how and if informed consent requirements in biotechnological research are to be justified by the promotion of personal autonomy: A proceduralist conception linking autonomy with authenticity, and a substantivist conception linking autonomy with control. The importance of distinguishing autonomy from liberty is emphasised, which opens for a possible conflict between respecting the freedom and the autonomy of research participants. It is argued that this has implications for how consent requirements based on different criteria of specificity and understanding should be viewed and justified.
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Notes
The imprisoned conscientious objector is an example of a person which has retained his moral but not his personal autonomy. He is autonomous in terms of which moral codes he chooses to adhere to, but not autonomous when it comes to other aspects of his freedom of choice. In this way we can distinguish moral and personal autonomy. The concept of political autonomy describes a third aspect of autonomy, namely the way in which a citizen is granted self-government vis-à-vis interference by the state. The personal and political autonomy of a person can be highly independent: A person granted political autonomy might nevertheless lack personal autonomy, and vice versa. Given the right to vote enhances your political autonomy, but not your personal autonomy, if you do not care to vote or just vote whatever your mother tells you to vote. To place high taxes on alcoholic beverages would restrict the political autonomy of the average citizen, but could enhance the personal autonomy of the potential heavy drinker.
There is considerable variation when it comes to the details of proceduralist theories of autonomy, but the version described here brings out most clearly those aspects which are directly relevant to the later discussion of how autonomy in general versus specific consent requirements in biobank research can be justified. The same goes for the version of the substantivist theory of autonomy developed in this article.
See Christman (2004, p. 154).
Dworkin thinks that there should be “no specific content to the decisions an autonomous person makes. Someone who wishes to be the kind of person who does whatever the doctor orders is as autonomous as the person who wants to evaluate these orders himself” (Dworkin 1988, pp. 108–109). He argues that a substantivist conception of autonomy “not only has the consequence that no government is legitimate, but also that such values as loyalty, objectivity, commitment, and love are inconsistent with being autonomous” (Dworkin 1988, p. 109). Though sweeping, Dworkin’s claim is surely correct, if interpreted as pointing out the incoherence of being both governed and relevantly autonomous when it comes to a specific act. Surely, there is no contradiction in being nonautonomous in a specific relation or situation, and generally capable of acting autonomously at the same time. It is entirely possible to forgo one’s autonomy in a specific relation and still retain one’s general autonomy. But why should a person aim to act autonomously in every situation and relation? Alternatively, why should we aim for a concept which grants people full autonomy in every voluntary relation? See also Christman (2005).
See Oshana (2006, pp. 62–64).
See Berlin (1969).
Odysseus deprives himself of any and all alternative options to act, even the possibility of exit, while the monk deprives himself of all options except for those of departure or obedience.
It is possible to draw a distinction between two criteria for ascribing autonomy: The information criterion, which requires that a person must be adequately informed in order to be autonomous, and the execution criterion, which requires that an autonomous person must make the relevant decisions herself, and not just leave them to others. Taylor then argues that the criterion of information is vital to giving informed consent, but not for being autonomous. I argue that the context of consent make the information criterion vital to autonomy, because being inadequately informed in this context is detrimental to your autonomy. If you, on the other hand, are adequately informed but nevertheless leave the relevant decision to others, you do not fill the execution criterion for being autonomous. There is a difference between being informed about the research but still leaving the decision to participate or not to others, and trusting others to decide for one and not caring about being informed. For this difference to be significant for the legitimacy of consent, however, requires that the consent is justified by something other than securing the autonomy of the potential research participant.
If it is argued, cf. section B1 of the Belmont Report, that the point of giving one’s consent is to respect those who are competent to give it, while the interests of other participants is secured without the use of consent, then those who have no such competence should be allowed to participate without giving their consent. This argument implies, however, that the interests of all participants is or could be secured without the use of informed consent, and that the point of asking for the consent of those with competence is to show them respect rather than enable them to promote or secure their interests from their unique point of view.
Does this view, however, permit the substantivist to retain her autonomy in trusting the researcher to provide the appropriate information she needs in order to give her specific consent? The answer is yes, if we concede that there is a crucial difference between authorizing someone to take significant decisions for you, and to have a basic trust in the researchers to be truthful and to avoid being negligent. The substantivist would, however, lose her autonomy if she inattentively and naively places her trust in the researchers’ truthfulness. Thanks to the MHEP reviewer challenging me on this point.
Except in the previously mentioned negative sense, where one is free to withdraw from the relevant study at any time—and is therefore seen to affirm any decision made on one’s behalf on the grounds that one does not withdraw. For the substantivist, however, the important point is that there is more to autonomy than the ability or right to leave.
Of course the use of a general consent might be supplemented with the provision of extensive information about the on-going research projects to the participants, together with the right to withdraw from the study at any time. But this would then make the general consent work as a specific consent, in practice (if the participants really keep themselves updated and retain their critical attitude) if not in principle.
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Acknowledgements
I would like to thank Berge Solberg, Bjørn Myskja, Alasdair Maclean, James Stacey Taylor, Jukka Varelius, Marit Hovdal Moan, Domhnall Mitchell and two anonymous reviewers from MHEP for their valuable comments on and discussions of earlier drafts of this article. I would also like to note my appreciation for helpful suggestions made by members of the audience who attended a presentation of mine at the 21st European Conference on the Philosophy of Medicine and Health Care in Cardiff in August 2007, where I touched on some of the issues more fully covered in this article.
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Ursin, L.Ø. Personal autonomy and informed consent. Med Health Care and Philos 12, 17–24 (2009). https://doi.org/10.1007/s11019-008-9144-0
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DOI: https://doi.org/10.1007/s11019-008-9144-0