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Duty of Disclosure Model

Appelbaum et al. (1987) provide an account of informed consent that is specifically tailored to the medical science field, from a legal perspective, which I have termed the ``duty of disclosure'' model. They state in their opening chapter that informed consent is a set of prescriptive legal rules that form the behavioural requirements for the interactions between physicians and patients; that it is an ethical doctrine ``rooted in our society's cherished value of autonomy'' that provides patients with their right to make their own decisions about medical procedures; and that it is an ``interpersonal process'' by which patients and physicians work together to make decisions about medical care. It is quite similar to something of a merger of the Faden and Beauchamp effective consent and autonomous authorisation models, but in much less detail. I include this discussion of the duty of disclosure model to firstly show a theory of informed consent from a mostly legal point of view, rather than from a theoretical point of view, and to cast a slightly different light on the use of autonomy to justify informed consent.

Appelbaum et al. identify deontological ethics as the main justification for informed consent because of Kant's categorical imperative, that is, the claim that a human being is an end, not just a mere means to an end [Appelbaum et al., 1987,Kant, 1785]. They suggest that although this is a good general rule, it cannot be consistently used to assess situations where two principles conflict. As for consequentialist ethics, they explain briefly the evolution of consequentialism from strict utilitarianism through to rule-utilitarianism, noting that rule-utilitarianism is close to deontological ethics because it has sets of priorities set as rules to follow, but that consequentialism generally is not usually the type of ethics used to justify informed consent, because, they claim, it requires ``an assessment of likely outcomes, which are not always easy to identify'' (p. 27). I disagree that this makes it unsuitable for use in informed consent theory, since it is not so difficult to predict some outcomes, with likely positive outcomes of informed consent (such as knowing that a computer user really does want to look at advertisements on their computer) and likely negative outcomes of lack of informed consent (such as a computer user being shown inappropriate or unwanted advertising after installing a program which did not adequately inform the user that such activity would occur) both easy to identify. However, Appelbaum et al. seem convinced that deontological theory is easier to apply in the case of informed consent, and adopt it for their ``duty of disclosure'' approach (outlined below).

Autonomy is pinpointed as the major underlying principle and justification of this informed consent theory, with Appelbaum et al. deeming it ``desirable, both intuitively and in the context of the political and social history of our civilisation'' (p. 22). They distinguish between the consequentialist and deontological views of autonomy, explaining that the Kantian view of the autonomous individual being able to reason about experiences is an ``ethical primacy'', whereas they read Mill's utilitarian argument to say that at its core, autonomy embodies freedom of individuals to be able to pursue personal happiness, as long as they also allow others to do the same. However, Mill considered autonomy ``free development of individuality'' [Mill, 1859/1985] and an intrinsic value [Christman, 2007], so it seems to me that Appelbaum et al. are making the mistake of equating personal happiness with some sort of hedonism rather than with the idea of maximal general happiness that brings about welfare (satisfaction of desire). At any rate, Appelbaum et al.'s treatment of autonomy is different from Faden and Beauchamp, who take care to point out that it is not the autonomy of the person that is important in informed consent decisions but the autonomy of the consent decision action.

Appelbaum et al. then explore another important value in consent decision making, namely the value of health, which they see as being in conflict with the value of autonomy, in that a governing body could theoretically decide something in the more general interest of the value of health, over the value of an individual's autonomy, for example, in the case of suicide or epidemic. They acknowledge this problem and claim to take a middle ground position, stating that a balance exists between the two values, a ``reasonable approach'' allowing for consistency between good medical practice and ethical and legal theories.

The practical approach for legal informed consent Appelbaum et al. take is a hybrid application of Faden and Beauchamp's effective and autonomous authorisation consent theories, in that they identify the ``duty of disclosure'' as the ``truly distinguishing and innovative aspect of the informed consent doctrine'' (p. 57), and the importance of understanding and voluntariness. They include the idea of competence within the value of understanding, and point out the problematic nature of the definition of the concept of voluntariness, claiming it to be a ``critical, though ill-defined, concept'' (p. 62). However, they are essentially reusing the theory of effective consent from Faden and Beauchamp, but taking more of a Kantian duty-based approach, making it more difficult to practically apply to medical ethics. This duty of disclosure model, without checks and balances on what is disclosed, makes it hard for a thorough attempt to be made at gaining proper understanding. The lack of restrictions on and mediation of disclosure makes the duty of disclosure model an inadequate theory for use in information technology, since there are requirements for standardised constraints on ways to present information and gain consent (such as restrictions on the style of language used, methods of obtaining legally-valid consent, etc.). This model would make developing informed consent policy much harder for the consent-requester by making it difficult to strictly set out the duty requirements and hard to establish the required balance between practice and theory.

The autonomous authorisation, effective consent, and duty of disclosure theories are troubling for an IT context because they put the focus on the consent itself without considering the bigger picture. Roger Brownsword (2004) is concerned by this as well (in a more general case), and explains it as creating a ``cult of consent'', whereby consent is idolised ``as a detached principle (on the same level as privacy, confidentiality, and non-discrimination)'', where in fact it should be incorporated into these other principles as part of the right to them: the right to privacy, confidentiality, or non-discrimination. Brownsword is also worried by what he terms the ``fixation'' on consent, where ``consent assumes a special significance''. He argues that consent is not the key to ethical and legal justification, and thus its own justificatory standard, but an element of the larger theory of justification. This argument is incorporated into the following theory of informed consent, which I examine in light of these theories.


next up previous contents
Next: ``Rethinking'' Informed Consent Up: Theory of Informed Consent Previous: Effective Consent   Contents
Catherine Flick 2010-02-03