Perplexed by autonomy

April 30, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogDuring the seminar this week we discussed an elusive concept. The concept is supposed to be about ordinary people, but it is a concept that ordinary people hardly use about themselves.

We talked about autonomy, which is a central notion in ethical discussions about how patients and research participants should be treated. They should be respected as persons who make their own decisions on the basis of information about the options.

The significance of this is evident if we consider cases where patients are given risky treatments without being informed about the risks and given the opportunity to refuse treatment. Or cases where vulnerable persons are forced to function as research subjects in various experiments.

“Respect people’s autonomy!” is comprehensible as a slogan against such tendencies.

What makes the concept more elusive, however, is that increasingly it is used more speculatively as the name of a valuable quality in the human, perhaps even the superior and most distinctive one. Instead of functioning as a comprehensible slogan in a real context, the notion becomes utopian, demanding that individuals constantly be informed about options and making decisions.

Autonomy becomes the superior imperative in all areas of human life.

Such a totalized imperative displaces the meaning of these areas of life, for example, the meaning of health care. Health care no longer seems being primarily about treating people’s diseases (while respecting their autonomy), but as being about developing diagnoses and treatments that give individual patients more information and options to choose between.

The concept of autonomy becomes a utopian construct that does not face the real-life challenges that made the slogan comprehensible, because it aims towards an ideal solution without need of the slogan. Every human practice is turned into an arena that first of all supports autonomy.

The speculative concept is somewhat self-contradictory, however, since it is imposed paternalistically as the essence of the human, while the humans concerned hardly use it to understand themselves. Well, then we’ll have to turn them into such individuals!

No, I confess I’m quite perplexed by the utopian-intellectual refinement of otherwise comprehensible slogans like autonomy, justice and freedom. These efforts appear like the noblest efforts of humankind, and yet they run amok with our words and displace the meaning of every human practice.

Pär Segerdahl

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Better not to know?

April 1, 2014

Inmirko-ethicsblog medical ethics a distinction is commonly made between negative and positive autonomy. One’s negative autonomy is exercised in refusing medical care or refusing some specific treatment. Positive autonomy is the right to choose a specific treatment (within what is available and allowed). Expressing a preference for not being informed about some medical condition seems to exercise negative autonomy.

Several criteria define the autonomy of a person in medical ethics, including knowledge. The knowledge a person has is not simply derived from the quantity of information made available, but by the real information that the subject is able to understand and use in the assessment. It can be said, then, that under this perspective, the more knowledge one has the more autonomous one is.

To illustrate the role of knowledge in autonomy, consider two couples with a family history of genetic diseases. In both cases the woman is pregnant. Couple 1 doesn’t want to make any genetic test, because “whatever the result we would never consider abortion an option.” Couple 1 has a set of values that is not compatible with abortion. Couple 2 has the same values and does not consider abortion as a feasible option. Nonetheless, couple 2 chooses genetic testing and the result of the test is a very high likelihood of an impaired offspring. Though knowing this, couple 2 decides to have the baby too.

The decision (to have the baby) of couple 1 and couple 2 is the same, but is reached through different paths. Couple 1 didn’t wish to know, it exercised a kind of negative autonomy. Couple 2 exerted a kind of positive autonomy deciding to gain knowledge about the condition (actual or likely) of its offspring. They displayed different attitudes toward knowledge, but both made a kind of autonomous choice. Couple 1 didn’t want to test its offspring, and one may be tempted to say that it didn’t put its values to test in the light of knowledge possible to attain, whereas couple 2 in testing its offspring also gauged the strength of the values on the basis of which they made their decision.

I would say that the couples’ first choices to know/not to know are equally autonomous. Henceforth, however, the couples’ paths diverge and couple 2’s final decision (to have the baby) is a more autonomous one, because it uses more relevant knowledge. Couple 1’s preference for negative autonomy (not to know) leads, on this account, to a less autonomous final decision (to have the baby).

Mirko Ancillotti

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The risk with knowing the risk

March 5, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogInforming individuals about their genetic risks of disease can be viewed as empowering them to make autonomous decisions about their future health.

But we respond to risk information not only as rational decision makers, but also with our bodies, feelings and attitudes.

An American study investigated elderly people whose genetic test results showed a predisposition for Alzheimer’s disease. One group was informed about the risk; the other group was not.

In subsequent memory tests, those who were informed about the risk performed markedly worse than those who weren’t informed.

Knowing the genetic risk thus increased the risk of a false positive diagnosis of dementia. The informed participants performed as if they already were on the verge of developing Alzheimer’s.

The risk with knowing the risk is thus a further complication to take into consideration when discussing biobank researchers’ obligation to return incidental genetic findings to individual participants.

Returning information about genetic risks cannot be viewed only as empowering participants, or as giving them valuable information in exchange for contributing to research.

It can also make people worse, it can distort research results, and it can lead to false diagnoses in clinical care.

Pär Segerdahl

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Beware of the vanity of “autonomy”

November 26, 2013

Important words easily become totalitarian. They begin with communicating some humanly important point, so we listen with attention. But then it is as if the words suffered from vanity and assumed that our attention was directed at them; not at what they were used to say.

Over time, the words become like grammatical codes of importance in human life.

A word that underwent such a process in bioethics is autonomy. It was first used to communicate an urgency, namely, that patients and research participants must be respected. They have a right to information about what is about to happen, and to decide whether they want to undergo some treatment or participate in some experiment.

Patients and research participants have this understandable right to autonomy.

But as the word was used to communicate this urgency, the importance seemed to move into the word. If patients have a right to “autonomy,” mustn’t autonomy be a valuable trait that can be supported so that we increase the value?

Is autonomy perhaps even the most valuable aspect of the human: our characteristic when we are in our most rational state as rational animals. Perhaps autonomy is human essence?

From having been a comprehensible right, autonomy assumed the appearance of a super important value to constantly look for, like for a holy grail.

The question arose: Should we restrict people’s freedom to make own choices, if the choices threaten future autonomy?

We occasionally do disrespect people’s choices: for their sake. What I’m blogging about today is the tendency to replace “for their sake” with “for the sake of future autonomy.”

A new article in the Journal of Medicine and Philosophy deals with the question. You find the article by clicking the link below:

The article is written by Manne Sjöstrand, Stefan Eriksson, Niklas Juth and Gert Helgesson. They criticize the idea of a paternalistic policy to restrict people’s freedom in order to support their future autonomy.

The authors choose to argue from the opponent’s point of view. They thus start out from the interpretation of autonomy as super important value, and then try to show that such a policy becomes self-defeating. Future autonomy will be threatened by such a policy, much like the dictatorship of the proletariat never liberated humans but chained them to a totalitarian order.

The article is well-argued and should alert those enchanted by the word “autonomy” to the need of checking their claims.

Even though the article does not disenchant the concept of autonomy through the philosophical humor that I described in a previous post, I was struck by the tragicomedy of claiming that the ultimate reason why healthcare staff should not comply with a patient’s request for help to die is that… assisted death would destroy the patient’s autonomy.

Pär Segerdahl

Minding our language - the Ethics Blog

Handling mistaken trust when doctors recruit patients as research participants

June 14, 2012

Patients seem more willing to participate in biobank research than the general public. A possible explanation is the doctor-patient relationship. Patients’ trust in health care professionals might help doctors to recruit them as research participants, perhaps making the task too easy.

That trust in doctors can induce a willingness to participate in research seems threatening to the notion of well-informed autonomous decision making. Can sentiments of trust be allowed to play such a prominent role in these processes?

Rather than dismissing trust as a naïve and irrational sentiment, a new article distinguishes between adequate and mistaken trust, and argues that being trusted implies a duty to compensate for mistaken trust.

The article in Bioethics is written by Linus Johnsson at CRB, together with Gert Helgesson, Mats G. Hansson and Stefan Eriksson.

The article discusses tree forms of mistaken trust:

  1. Misplaced trust: Trusted doctors may lack relevant knowledge of biobank research (for example, about the protection of privacy).
  2. Irrational trust: Patients may be mistaken about why they trust the doctor (the doctor may actually be a form of father or mother figure for the patient).
  3. Inappropriate trust: Patients may inappropriately expect doctors always to play the role of therapists and fail to see that doctors sometimes play the role of research representatives who ask patients to contribute to the common good.

The idea in the paper, if I understand it, is that instead of dismissing trust because it might easily be mistaken in these ways, we need to acknowledge that being trusted implies a duty to handle the potentiality of mistaken trust.

Trust is not a one-sided sentiment: it creates responsibilities in the person who is trusted. If doctors take these responsibilities seriously, the relationship of trust immediately begins to look… well, more trustworthy and rational.

How can mistaken forms of trust be compensated for?

Misplaced trust in doctors can be compensated for by developing the relevant expertise (or by dispelling the illusion that one has it). Irrational trust can be compensated for by supporting the patient’s reasoning and moral agency. Inappropriate trust can be compensated for by nurturing a culture with normative expectations that doctors play more than one role; a culture where patients can expect to be asked by the doctor if they want to contribute to the common good.

If patients’ trust is seen in conjunction with these corresponding moral responsibilities of doctors, the relationship of trust can be understood as supporting the patients’ own decision making rather than undermining it.

That, at least, is how I understood this subtle philosophical treatment of trust and its role when patients are recruited by doctors as participants in biobank research.

Pär Segerdahl

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