Consent based on trust rather than information?

March 21, 2017

Pär SegerdahlConsent to research participation has two dimensions. On the one hand, the researcher wants to do something with the participant: we don’t know what until the researcher tells. To obtain consent, the researcher must provide information about what will be done, what the purpose is, what the risks and benefits are – so that potential participants can decide whether to consent or not.

On the other hand, potential participants would hardly believe the information and consider consenting, if they didn’t trust the researcher or the research institution. If trust is strong, they might consent even without considering the information. Presumably, this occurs often.

The fact that consent can be given based on trust has led to a discussion of trust-based consent as more or less a separate form of consent, next to informed consent. An article in the journal Bioethics, for example, argues that consent based on trust is not morally inferior to consent based on information. Consent based on trust supports autonomy, voluntariness, non-manipulation and non-exploitation as much as consent based on information does, the authors argue.

I think it is important to highlight trust as a dimension of consent to research participation. Consent based on trust need not be morally inferior to consent based on careful study of information.

However, I get puzzled over the tendency to speak of trust-based consent as almost a separate form of consent, next to informed consent. That researchers consider ethical aspects of planned research and tell about them seems to be a concrete way of manifesting responsibility, respect and trustworthiness.

Carefully planning and going through the consent procedure is an ethical practice that can make us better humans: we change through what we do. It also opens up for respondents to say, “Thank you, I trust you, I don’t need to know more, I will participate.” Information and trust go hand in hand. There is dynamic interplay between them.

I guess that a background to talk of trust-based consent as almost a separate form of consent is another tendency: the tendency to purify “information” as cognitive and to idealize humans as rational decision makers. In addition, there is a tendency to regiment the information that “must” be provided.

This tendency to abstract and regulate “information” has made informed consent into what sometimes is perceived as an empty, bureaucratic procedure. Nothing that makes us better humans, in other words!

It would be unfortunate if we established two one-dimensional forms of consent instead of seeing information and trust as two dimensions of consent to research.

Another article in Bioethics presents a concrete model of trust-based consent to biobank research. Happily, the model includes willingly telling participants about biobank research. Among other things, one explains why one cannot specify which research projects will use the donated biological samples, as this lies in the future. Instead, one gives broad information about what kind of research the biobank supports, and one informs participants that they can limit the use of the material they donate if they want to. And one tells about much more.

Information and trust seem here to go hand in hand.

Pär Segerdahl

Halmsted Kongsholm, N. C., Kappel, K. 2017. Is consent based on trust morally inferior to consent based on information? Bioethics. doi: 10.1111/bioe.12342

Sanchini, V. et al. 2016. A trust-based pact in research biobanks. From theory to practice. Bioethics 4: 260-271. doi: 10.1111/bioe.12184

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Physicians’ experiences of do-not-resuscitate orders

September 21, 2016

Pär SegerdahlCritically ill patients sometimes have such a poor prognosis that cardiopulmonary resuscitation for cardiac arrest (CPR) would not help. They are so weak that they would not survive the treatment. If they survive, they do so with even poorer quality of life. The physician can then write a so-called DNR decision, which means that CPR should not be performed.

Mona Pettersson, PhD student at CRB, writes her thesis on these decisions. I have previously written about her first study, in which she interviewed nurses about their experiences of DNR decisions at Swedish hematology and oncology departments.

This summer the Journal of Palliative Care and Medicine published the second study, in which physicians were interviewed about their experiences of these decisions.

In the interview material, Mona Pettersson discerns three roles that physicians perceive they have. They act as decision maker, as patient advocate and mediator for relatives, and as team member. Physicians describe their experiences of these roles, such as the importance of making clear to relatives that it is the physician who makes the decision – so that relatives don’t risk feeling guilty.

The interviews with physicians also contain descriptions of ethical difficulties associated with DNR decisions. Although the physicians emphasize that the decision is made on medical grounds, they also describe ethical challenges and trade-offs. The decisions seem to be especially difficult in hematology wards, where patients can get intensive treatment for a long time, and where even the treatment makes them ill, but almost up to the last moment can be regarded as treatable. Here decisions are made quickly and at a late stage. Physicians’ experiences of the decision not to resuscitate vary from experiencing that they make themselves God, to experiencing it as just one medical decision among others.

In her conclusion, Mona Pettersson emphasizes that the results indicate how DNR decisions are made not only on medical grounds (such as prognosis and prospect of surviving cardiopulmonary resuscitation). They are made also with reference also to ethical values such as autonomy and quality of life after resuscitation.

In her future research, Mona Petterson will examine the ethical skills needed in DNR decisions and how they can be learned and developed.

Pär Segerdahl

Pettersson, M. Hedström, M. and Höglund, A. Physicians’ experiences of do-not-resuscitate (DNR) orders in hematology and oncology care – a qualitative study. Journal of Palliative Care and Medicine. 2016. DOI: 10.4172 / 2165-7386.1000275

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Notebook, not Facebook

March 30, 2016

Pär SegerdahlI take the liberty of striking a blow for the notebook.

I miss the voices people develop when they use to keep their own notes. The conversation with yourself gives depth – “I have thought about this” – to your conversation with others.

The erosion of collegial structures at universities is worrisome. But what especially concerns me is the notebook culture, which I believe needs to be rediscovered. Without own notebooks, no real education and no real knowledge.

It isn’t about withdrawing to one’s study to write esoteric notes. It is about developing one’s own groundwork in the life with others. It is developed in (temporary) seclusion, in response to life with others. Then you can converse, because you will have something to say, something of your own.

Cultures deepen through the rumination in diaries and notebooks. Without this simple practice, cultures erode and voices sound thinner. We need to carry culture on our own shoulders.

Kafka recorded in one of his notebooks a picture that I often think of. It is the image of messengers rushing around with messages that they received from other messengers. But it turns out that there is no author of these messages. There are only messengers. I see this as an image of a world without notebooks.

Kant spoke of human authority and autonomy. In Kafka’s picture there is no authority and no autonomy, for no one is the author of their own words: just the messengers of words from other messengers. For once being the author, not only the messenger of what other messengers passed on: wouldn’t that be something!

Become the author of your own words by taking notes! The notebook is the origin of all messages worth communicating. I am a notebook individualist.

To think and reflect is not only about having time. It is about using the time to converse with yourself. That conversation is lifelong. When you converse with others, you convey the lifelong conversation with yourself.

Artists have probably more than others retained the practice of using sketchbooks, of regularly practicing music more informally and privately, of making drafts of stories and novels. That practice gives them a basis to create. We have much to learn from the artists. They are the last to maintain culture, through the sketchbooks in which they constantly scribble.

Nothing is more responsible and authoritative than keeping your own notes. The notes don’t have to be brilliant or groundbreaking. Only your own sincere words with yourself. That is originality! Through the notebook you develop the integrity that is worth defending. And that is worth sharing with others, who of course also have notebooks.

I don’t want to read your Facebook updates, but perhaps your notes. You read mine here. So get a notebook if you don’t already have one. It is the most radical thing you can do today.

Pär Segerdahl

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Critique of the motivation for dynamic consent to biobank research

March 23, 2016

Pär SegerdahlBiobank research has undeniably challenged research ethics and the requirement for informed consent. We are after all dealing with collection of biological samples for future, yet unspecified research. Thus, one cannot give donors specific information about the research in which their samples will be used. It might seem like asking them to consent to unknown research projects x, y, z.

While some argue that broad consent for future research is specific enough to be genuine consent to something – one can inform about the framework that applies to the research – others argue that biobank research undermines the autonomy of research participants. Something must therefore be done about it.

Dynamic consent is such a proposed measure. The idea is that participants in biobank research, through a website, will be kept continuously informed about planned research, and continually make decisions about their participation. Through this IT measure, participants are placed at the center of decision making process rather than transferring all power to the researchers. Dynamic consent empowers research participants and supports their autonomy, it is claimed.

In an article in the journal Bioethics, Linus Johnsson and Stefan Eriksson critically examine the understanding of autonomy in the debate on dynamic consent.

First, the authors argue that autonomy is misunderstood as a feat. Autonomy is rather a right people have to decide for themselves what to do in situations that matter to them.

Second, they argue that the concept of autonomy is used too broadly, hiding important distinctions. In fact, three different ways of respecting people are conflated:

  1. Autonomy: respecting people’s right to decide for themselves about what to do.
  2. Integrity: respecting people’s right to draw the lines between private and social life.
  3. Authority: respecting people’s right to take responsibility for themselves, for their families, and for their relations to society.

Authority is respected by empowering people: by giving them the tools they need to live responsibly. In dynamic consent, the website is such a tool. It empowers participants to act as responsible citizens concerning the planning and carrying out of research in society.

By separating three forms of respect which are confused as “autonomy,” the authors can propose the following critical analysis of the motivation for dynamic consent. Rather than respecting people’s right to decide for themselves about what to do, the aim is to empower them. But if the empowerment forces them to sit in front of the computer to be informed, it violates their integrity.

Such intrusion could be justified if medical research were a suitable arena for people’s empowerment as citizens – an assumption which the authors point out is doubtful.

Pär Segerdahl

Johnson, L. and Eriksson, S. 2016. “Autonomy is a right, not a feat: How theoretical misconceptions have muddled the debate on dynamic consent to biobank research.” Bioethics, DOI: 10.1111/bioe.12254

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Does bioethics understand the family?

September 30, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogTraditional bioethics does not pay sufficient attention to the role that family relationships can play, for example, in decisions about organ donation. New opportunities in healthcare create moral problems that bioethics therefore cannot identify and manage. To identify and understand these moral problems requires a specific ethics of families, writes among others Ulrik Kihlbom in an article in the Journal of Medical Ethics.

The authors are members of the “Network on ethics of families.” In the article, they use a striking example of a moral problem that becomes invisible in standard bioethics. I believe the example is authentic.

Annie’s brother Stewart has kidney problems. Annie would like to donate one of her kidneys to her brother, but cannot because she does not have matching blood or tissue type. Thanks to a new healthcare initiative, she can however join a donor pool. If the computer can identify a suitable person in the pool who can receive her kidney and another suitable person who can donate a kidney to her brother, the result is the same: Annie donates, Stewart receives.

But Annie does not perceive it as the same thing. She cannot explain why she suddenly becomes hesitant to donate her kidney, when the healthcare team treats indirect donation to the brother via the pool as completely analogous to direct donation to her brother.

Annie does not reason according to the professional logic that the healthcare team and many bioethicists use. She is willing to donate a kidney to her brother. To donate to a stranger to thereby enable her brother to get a kidney is not the same thing.

Understanding Annie’s problems with the healthcare team’s proposal requires a different form of ethical thinking, a family ethics.

Another aspect of Annie’s willingness to donate a kidney to her brother that is made ​​invisible by traditional bioethics is its unconditional character. Donating an organ to a needing member of the family can strike families as a given responsibility. They can feel they have no choice. This is difficult to understand from a traditional bioethical perspective that emphasizes individuals’ autonomous and rational choices between alternatives.

I would like to add that the professionally well-motivated donor pool possibly even plays on the family ethics that one does not understand. Are not new donors recruited by appealing to the unconditional willingness to donate within the family?

The article moreover contains a discussion about problems of justice, requiring a perspective from family ethics to be seen. Read it!

Pär Segerdahl

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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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