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č. 13 Mýtus dnes

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Knowledge and Autonomy

"Please, don't tell me!" by Herring & Foster:

 

The notion of autonomy is not so easily definable, and many have struggled to determine its exact scope and meaning. However, most accounts would probably agree that autonomy entails being able to make decisions about one's life, and that individual autonomy rights can be limited if and to the extent that the exercise of those right causes harm to others[1]. We shall be concerned with the question whether a "right not to know" something about one's situation is one of these rights, or, more precisely, whether one's autonomy is increased with the amount of accurate knowledge of one's abilities, disabilities, possibilities, circumstances and all that constitutes one's present situation. For it has been a subject of dispute whether full knowledge of one's situation is a necessary precondition of being in charge of our lives, and a necessary constituent of individual autonomy.

This is especially pertinent to medical practice: a patient has to acquire all relevant information regarding her condition and the nature of available treatment before she can be asked to give an "informed consent" and exercise her right to make autonomous decisions about her life or health. Ignorance of her condition, or of the treatment proposed, would in this case clearly be an obstacle to autonomous decision-making and the patient has every reason to ask for the relevant information which will help her understand both her condition and the available solutions. In this case, knowledge and autonomy go hand in hand. The issue gets more complicated in cases where no immediate treatment is required or where the information concerns genetic preconditions that may not lead to the development of disease. The patient has a right to refuse the disclosure of information, even if she places herself at risk of harm. Her autonomy is to be respected. Her "right not to know" about her genetic state is thought to serve the interest of autonomy and is well established in legal framework.[2]

 

Some opponents of the "right not to know" argue that since ignorance is inimical to autonomy, a person cannot autonomously choose to remain ignorant about her state without being inconsistent (the Incoherence Objection). A person cannot seek to enhance her autonomy by renouncing her ability to control her life, which is a key constituent of autonomy.

 

In their article, Herring and Foster try to defend a different view. They argue that in some cases, ignorance does not impair autonomy but rather enhances it. (p.21) One such case comes in the example of a respected philosopher, Dr. Fearful. Dr. Fearful is very anxious to keep his hope up and asks his doctor not to reveal whether his routine blood test revealed a predisposition to dementia. He argues that, knowing this piece of information, he would certainly sink into a malaise (p. 22) and it would put him in a long-term discomfort. He chooses to remain ignorant about the possible findings.

According to Herring and Foster, Dr. Fearful's decision is a perfectly legitimate use of autonomy for choosing not to know is an essential part and prerequisite of the freedom to choose how to develop our lives (p. 22). There seems to be nothing objectionable about his decision, since (in the absence of an available cure) neither he nor the doctors can change anything about his condition.

            The Incoherence Objection, according to which the agent cannot autonomously limit their own autonomy by denying herself the ability to make informed decisions, is not at all unknown to Herring and Foster. An autonomous individual, insofar as she wants to remain autonomous, does not always have a moral or prudential duty to be informed. While they assert their sympathy towards the link between knowledge and autonomy, they insist that in some cases, the invasion of privacy (the unwanted revelation of information) might not be justifiable on autonomy-grounds - as in the Dr. Fearful example - and the individual's decision ought to be respected, unless it is overridden by other ethical considerations (such as potential harm to others, availability of effective treatment, accuracy of medical assessment, availability of preventive measures etc.).[3] According to Herring and Foster, it should be possible to exercise one's autonomy to choose ignorance (p. 26). They insist that ignorance is not necessarily an obstacle to autonomy, but may as well be a means leading to it.

 

Their approach has one undeniable advantage, for it rules out a considerable number of cases of "genetic paternalism", where the doctor reveals the genetic findings without he patient's consent and justifies the unauthorized revelation on the grounds that the doctor knows better than the patient what is good for the patient.

 

Whatever the advantages of that approach, I want to agrue that the uncalled-for disclosure of test results at that moment may still be justified as being in the interest of the patient's autonomy. Imagine that Dr. Fearful might be upset at first, he may brood over his sad condition for a while but after giving his situation some more thought, he may conclude that the acquired information is useful after all. He may accomodate the discovered predisposition in his life plans, he can make necessary steps to prepare his relatives for the eventuality and he can use the knowledge to assume a fuller responsibility and control over his life. Or, with a 50% probability, he may learn that there is no indication of the feared predisposition, in which case he would be spared the uncertainty, the nagging „what if" at the back of his mind, which would otherwise unavoidably affect his life negatively. And thus, the doctor might be justified in not respecting Dr. Fearful's wish at one moment, to open to him a possibility of fuller autonomy in the future. The question is, however, whether the doctor has any right to interfere with the patient's life in this way? Can the patient's own judgement be overridden on such grounds? [4] Or, in other words, can paternalism lead eventually to autonomy (especially in those cases where the results reveal a treatable disease)?

 

The problem might get even more interesting if we bring in the considerations on authentic values. When in doubt whether the maximum possible amount of knowledge implies the maximum autonomy, we should first consider the relationship between knowledge and authenticity. As Insoo Huyn suggests in his article Authentic Values and Individual Autonomy, an individual's authentic values are an important condition of autonomy, without which the individual cannot autonomously judge his desires and aims. If we autonomously pursue or endorse a certain value, it must be "our own".[5] A decision can be appropriately called self-determining only if it is guided by authentic values. Now, is knowledge always and necessarily an authentic value for everyone?

Most of us would agree that an autonomous individual must be allowed to freely pursue their own conception of good. Many people may uphold such a system of values and beliefs that does not include an interest in accurate knowledge - they may reasonably maintain the attitude that "ignorance is bliss", and in the light of this belief, choose a course of action that deprives them of whatever valuable knowledge may be attainable in their particular situation. Ignorance of particular information under particular circumstances simply fulfills their version of well-being and, believing ignorance to be the means to their desired end, they accept ignorance as an authentic value. Even if paternalism might be successfully defended on the grounds that knowledge is a necessary component of autonomy, it may not be compatible with the notion of authenticity. It is a widely accepted thesis that an autonomous person must be able to make important decisions about her life, but as Hyun suggests, these autonomous decisions must also be in accord with her own values and goals - if is to be her life. If particular knowledge is not recognized as a value by the person, then surely, she might be justified in choosing ignorance in the interest of autonomy. Revealing the information against her will would impair her autonomy and prevent her from pursuing her authentic values.

 

We might now conclude that knowledge might lead to a greater autonomy (as the objectors to "the right not to know" say), but only when knowledge of that particular piece of information is the value that the agent chooses to endorse under the particular circumstances. It remains unclear whether Dr. Fearful entreats his doctor to withhold the information because he recognizes ignorance as an authentic value, or simply because he is afraid of the consequences that might ensue from the confirmation about his genetic predisposition, but, whatever the case, he is honest and sincere in his request (and there seems to be no indication of "incoherence"). If the feared predisposition were a treatable one, or one potentially harmful to others, then the disrecpect for the patient's decision could be justified on these grounds, but if the predisposition affects no one but the patient, and does not promise any successful treatment, we may not be able to find justification for it. However, if we want to defend this view against the objection from incoherence, we do not have to restrict ourselves merely to the arguments of Herring and Foster's (i.e. that the unwanted knowledge would impair the patient's autonomy - for it is difficult to predict what the information will do), but we might also insist that the revelation of knowledge would in given cases be a restriction of authenticity, and therefore, of autonomy. In this way, we will avoid the problem of incoherence, for the notion of "an authentic ignorant" contains no inherent cotradiction. Dr. Fearful might be perfectly authentic in his request, regardless of whether he would benefit from the knowledge (for although he might eventually benefit from the information, it changes nothing about the fact that he did not autonomously chose to acquire it).

  At least in Dr. Fearful's case, the choice to remain ignorant as well as the choice to be informed are, in my view, legitimate uses of autonomy. Not because Dr. Fearful will actually benefit from his ignorance (he would not "sink into a malaise" and despair), or because the revelation would impair his autonomy into the future, but because he autonomously chose to avoid the particular knowledge in pursuit of his own conception of the autonomous and authentic life. If ignorance can be an authentic value, not abandoned even after a thorough critical reflection, then Herring and Foster might have a new way of defending their view against the incoherence objection.

 

Anna Šolarová

 

 

 



[1]              Herring and Foster, p. 21

[2]              Article 5(c) of the UNESCO Universal Declaration on the Human Genome and Human Rights provides that "the right of every individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected."

[3]              p. 27

[4]              Herring and Foster deny any such paternalism: "Autonomy insists that we should be in charge of our destinies and that others should not override our decisions or restrict our actions on the basis that they know better than us what would be good for us, or on the basis merely that they regard our decisions or actions as immoral." (p. 21)

[5]              Huyn, p. 195

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