Not knowing why

January 17, 2018

Pär SegerdahlOften we do not know why we think as do. We may like a drawing, but we cannot say why we think it is good. We may find it unpleasant that researchers study human embryos in petri dishes and then discard them, but we cannot say why.

Personally, I find not knowing why interesting and I do not mind spending ages without being able to state a single sensible reason. There is something fruitful in it, something secretly promising. But it can also drive people crazy. The strange thing is that you easily satisfy them by giving any idiotic reason, as long as it superficially sounds like “saying why.” It satisfies the intellect, which cannot understand how anyone can think something without a reason. It reminds me of a complaint about the neighbor’s dog: it often barks without reasonable grounds.

I would not be suited to participate in a TV debate program. The strange thing is that in such debates people really do behave like barking dogs, precisely by always giving reasons: “Your opinion is idiotic, because woof-woof, woof-woof!” – Debating is most likely overrated… but why do I think so?

Immediately satisfying the demands of the intellect seems unwise. Apart from committing us to opinions that must be defended, which makes it difficult to change, we are forced to give our thoughts premature form. They are prevented from deepening and surprising us.

A Chinese philosopher said, “To pretend to know when you do not know is a disease.” But the intellect forces us to pretend to know. The intellect goes insane if we do not exhibit this insanity.

Acknowledging that you do not know, and then giving yourself time, that is wisdom.

Pär Segerdahl

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The unconscious deserves moral attention

January 10, 2018

Pär SegerdahlLast autumn, Michele Farisco wrote one of the most read posts on The Ethics Blog. The post was later republished by BioEdge.

Today, I want to recommend a recent article where Farisco develops his thinking – read it in the journal, Philosophy, Ethics, and Humanities in Medicine.

The article will certainly receive at least as much attention as the blog post did. Together with Kathinka Evers, Farisco develops a way of thinking about the unconscious that at first seems controversial, but which after careful consideration becomes increasingly credible. That combination is hard to beat.

What is it about? It is about patients with serious brain injuries, perhaps after a traffic accident. Ethical discussions about these patients usually focus on residual consciousness. We think that there is an absolute difference between consciousness and unconsciousness. Only a conscious person can experience well-being. Only a conscious person can have interests. Therefore, a patient with residual consciousness deserves a completely different care than an unconscious patient. A different attention to pain relief, peace and quiet, and stimulation. – Why create a warm and stimulating environment if the patient is completely unaware of it?

In the article, Farisco challenges the absolute difference between consciousness and unconsciousness. He describes neuroscientific evidence that indicates two often-overlooked connections between conscious and unconscious brain processes. The first is that the unconscious (at least partly) has the abilities that are considered ethically relevant when residual consciousness is discussed. The other connection is that conscious and unconscious brain processes are mutually dependent. They shape each other. Even unconsciously, the brain reacts uniquely to the voices of family members.

Farisco does not mean that this proves that we have an obligation to treat unconscious patients as conscious. However, the unconscious deserves moral attention. Perhaps we should strive to assess also retained unconscious abilities. In some cases, we should perhaps play the music the patient loved before the accident.

Pär Segerdahl

Farisco, M. and Evers, K. The ethical relevance of the unconscious. Philosophy, Ethics, and Humanities in Medicine (2017) DOI 10.1186/s13010-017-0053-9

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Big questions do not have small answers

December 20, 2017

Pär SegerdahlSome questions we perceive are “bigger” than other questions. What does it mean to live, to be, rather than not to be? When does life begin and when does it end? What is a human being? Does life have a meaning or do we endow it with mere façades of meaning?

We do not expect definitive answers to these questions, except for a joke. They are wonderings that accompany us and occasionally confront us. We may then notice that we have an attitude to them. Perhaps a different attitude today than ten years ago. The attitude is not a definitive answer, not a doctrine about reality that dry investigations could support or falsify.

Bioethics sometimes comes close to these big questions, namely, when scientists study what we can associate with the mystery of living, being, existing. An example is embryonic stem cell research, where scientists harvest stem cells from human embryos. Even proponents of such research may experience that there is something sensitive about the embryo. I would not exist, we would not live, you would not be, unless once upon a time there was an embryo…

The embryo is thus easily associated with the big questions of life. This implies that bioethics has to handle them. How does it approach them?

Usually by seeking specific answers to the questions. Like super-smart lawyers who finally get the hang of these age-old, obscure issues and straighten them out for us.

Do you know, for example, when a human being begins to exist? Two bioethicists combined biological facts with philosophical analysis to provide a definitive answer: A human being begins to exist sixteen days after fertilization.

Incorrect, other bioethicists objected. They too combined biological facts with philosophical analysis, but provided another definitive answer: A human being begins to exist already with fertilization. The only exception is twins. They begin to exist later, but much earlier than sixteen days after fertilization.

The bioethicists I am talking about are proud of their intellectual capacity to provide specific answers to such a big question about human existence. However, if big questions do not have small answers, except for a joke, do they not deliver the answer at the cost of losing the question?

The question I am currently working on is how bioethics can avoid losing the questions we perceive are “bigger” than other questions.

Pär Segerdahl

Smith, B. & Brogaard, B. 2003. Sixteen days. Journal of Medicine and Philosophy 28: 45-78.

Damschen, G., Gómez-Lobo, A. & Schönecker, D. 2006. Sixteen days? A reply to B. Smith and B. Brogaard on the beginning of human individuals. Journal of Medicine and Philosophy 31: 165-175.

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Ethics, human rights and responsible innovation

October 31, 2017

josepine-fernow2It is difficult to predict the consequences of developing and using new technologies. We interact with smart devices and intelligent software on an almost daily basis. Some of us use prosthetics and implants to go about our business and most of us will likely live to see self-driving cars. In the meantime, Swedish research shows that petting robot cats looks promising in the care of patients with dementia. Genetic tests are cheaper than ever, and available to both patients and consumers. If you spit in a tube and mail it to a US company, they will tell you where your ancestors are from. Who knows? You could be part sub Saharan African, and part Scandinavian at the same time, and (likely) still be you.

Technologies, new and old, have both ethical and human rights impact. Today, we are closer to scenarios we only pictured in science fiction a few decades ago. Technology develops fast and it is difficult to predict what is on the horizon. The legislation, regulation and ethical guidance we have today was developed for a different future. Policy makers struggle to assess the ethical, legal and human rights impact of new and emerging technologies. These frameworks are challenged when a country like Saudi Arabia, criticized for not giving equal rights to women, offers a robot honorary citizenship. This autumn marks the start of a research initiative that will look at some of these questions. A group of researchers from Europe, Asia, Africa and the Americas join forces to help improve the ethical and legal frameworks we have today.

The SIENNA project (short for Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact) will deliver proposals for professional ethics codes, guidelines for research ethics committees and better regulation in three areas: human genetics and genomics, human enhancement, and artificial intelligence & robotics. The proposals will build on input from stakeholders, experts and citizens. SIENNA will also look at some of the more philosophical questions these technologies raise: Where do we draw the line between health and illness, normality and abnormality? Can we expect intelligent software to be moral? Do we accept giving up some of our privacy to screen our genome for genetic disorders? And if giving up some of our personal liberty is the price we have to pay to interact with machines, are we willing to pay it?

 The project is co-ordinated by the University of Twente. Uppsala University’s Centre for Research Ethics & Bioethics contributes expertise on the ethical, legal and social issues of genetics and genomics, and experience of communicating European research. Visit the SIENNA website at www.sienna-project.eu to find out more about the project and our partners!

Josepine Fernow

The SIENNA projectStakeholder-informed ethics for new technologies with high socio-economic and human rights impact – has received just under € 4 million for a 3,5 year project under the European Union’s H2020 research and innovation programme, grant agreement No 741716.

Disclaimer: This text and its contents reflects only SIENNA’s view. The Commission is not responsible for any use that may be made of the information it contains.

SIENNA project

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Beyond awareness: the need for a more comprehensive ethics of disorders of consciousness

October 23, 2017

Michele FariscoDisorders of consciousness like coma, unresponsive wakefulness syndrome, and what is known as minimally conscious state, are among the most challenging issues in current ethical debates. Ethical analyses of these states usually focus on the ‘residual’ awareness that these patients might still have. Such awareness is taken to have bearing on other factors that are usually considered ethically central, like the patients’ well-being.

Yet, when we take a look at recent scientific investigations of mental activity it appears that things are much more complicated than usually thought. Cognitive science provides empirical evidence that the unconscious brain is able to perform almost all the activities that we (wrongly) think are exclusive of consciousness, including enjoying positive emotions and disregarding negative ones. To illustrate, people that are subliminally exposed to drawings of happy or sad faces are emotionally conditioned in their evaluation of unknown objects, like Chinese characters for people who don’t know Chinese. If preceded by subliminal happy faces, these characters are more likely to elicit positive feelings when consciously perceived. This means that unconscious emotions exist, and these emotions are (plausibly) positive or negative. This in turn suggests that consciousness is not required to have emotions.

Accordingly, people with disorders of consciousness could also have unconscious emotions. Even though they are not capable of external behavior from which we could infer the presence of positive or negative emotional life, we cannot rule out the possibility that these patients’ residual brain activity is related to a residual unaware emotional life, which can be either positive or negative.

We should try to avoid becoming biased by the sort of “consciousness-centrism” that impedes us from seeing the total landscape: there is a lot going on behind (and beyond) the eyes of our awareness.

What does this imply for the ethics of caring for and interacting with people affected by severe disorders of consciousness? Well, as previously said, the ethical discourse surrounding the care for and the relationship with these people has usually focused on their residual awareness, scrutinizing whether and to what extent these people could consciously experience good and bad feelings. Yet if it is possible to have these experiences at the unaware level, shouldn’t this be a relevant consideration when engaging in an ethical analysis of patients with disorders of consciousness? In other words, shouldn’t we take care of their residual unconsciousness in addition to their residual consciousness?

I believe we need to enlarge the scope of our ethical analyses of patients with disorders of consciousness, or at least acknowledge that focusing on residual consciousness is not all we should do, even if it is all we presently can do.

Michele Farisco

Winkielman P., Berridge K.C. Unconscious emotion. Current Directions in Psychological Science. 2004;13(3):120-3

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Communicating risk in human terms

October 4, 2017

Pär SegerdahlThe concept of risk used in genetics is a technical term. For the specialist, risk is the probability of an undesired event, for example, that an individual develops some form of cancer. Risk is usually stated as a percentage.

It is well known that patients have difficulties to access the probability notion of risk. What do their difficulties mean?

Technical notions, which experts use in their specialist fields, usually have high status. The attitude is: this is what risk really is. Based on such an attitude, people’s difficulties mean: they have difficulties to understand risk. Therefore, we have to help them understand, by using educational tools that explain to them what we mean (we who know what risk is).

We could speak of communicating risk in the experts’ terms (and on their terms). Of course, one tries to communicate risk as simply and accessibly as possible. However, the notion of ​​what to communicate is fixed. Anything else would disturb the attitude that the expert knows what risk really is.

In an article in Patient Education and Counseling, Jennifer Viberg Johansson (along with Pär Segerdahl, Ulrika Hösterey Ugander, Mats G. Hansson and Sophie Langenskiöld) makes an inquiry that departs from this pattern. She explores how people themselves make sense of genetic risk.

How does Viberg’s study depart from the pattern? She does not use the technical notion of risk as the norm for understanding risk.

Viberg interviewed healthy participants in a large research project. She found that they avoided the technical, probability notion of genetic risk. Instead, they used a binary concept of risk. Genetic risk (e.g., for breast cancer) is something that you have or do not have.

Furthermore, they interpreted risk in three ways in terms of time. Past: The risk has been in my genome for a long time. When symptoms arise, the genetic risk is the cause of the disease. Present: The risk is in my genome now, making me a person who is at risk. Future: The risk will be in my genome my entire life, but maybe I can control it through preventive measures.

These temporal dimensions are not surprising. People try to understand risk in the midst of their lives, which evolve in time.

It is not the case, then, that people “fail” to understand. They do understand, but in their own terms. They think of genetic risk as something that one has or does not have. They understand genetic risk in terms of how life evolves in time. A practical conclusion that Viberg draws is that we should try to adapt genetic risk communication to these “lay” conceptions of risk, which probably help people make difficult decisions.

We could speak of communicating risk in human terms (and on human terms). What does genetic risk mean in terms of someone’s past, present and future life?

When you talk with people with lives to live, that is probably what the risk really is.

Pär Segerdahl

J. Viberg Johansson, et al., Making sense of genetic risk: A qualitative focus-group study of healthy participants in genomic research, Patient Educ Couns (2017), http://dx.doi.org/10.1016/j.pec.2017.09.009

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Taking people’s moral concerns seriously

September 19, 2017

Pär SegerdahlI recently published a post on how anxiety can take possession of the intellect: how anxiety, when it is interpreted by thoughts that rationalize it, can cause moral panic.

A common way of dealing with people’s moral concerns in bioethics is to take the concerns intellectually seriously. One tries to find logical reasons for or against the “correctness” of the anxiety. Is the embryo already a person? If it is, then it is correct to be morally concerned about embryonic stem cell research. Persons are then killed by researchers, who are almost murderers. However, if the embryo is not a person, but just an accumulation of cells, then there is at least one reason less to worry.

Bioethicists therefore set out to conclude the metaphysical issue about “the status of the embryo.” So that we will know whether it is intellectually correct to worry or not! One reason for this intellectualized approach is probably society’s need for foundations for decision-making. Should embryo research be allowed and, if so, in what forms? Decision-makers need to be able to motivate their decisions by citing intellectually appropriate reasons.

Bioethicists thus interpret people’s moral concerns as if they were motivated by intuitive folk-metaphysical thinking. This thinking may not always be perfectly logical or scientifically informed, but it should be possible to straighten out. That would satisfy society’s need for intellectually well-founded decisions that “take people’s concerns seriously.”

The problem with this way of taking people’s concerns seriously is that their worries are intellectualized. Do we worry on the basis of logic? Are children afraid of ghosts because they cherish a metaphysical principle that assigns a dangerous status to ghosts? Can their fear be dealt with by demonstrating that their metaphysical principle is untenable? Or by pointing out to them that there is no evidence of the existence of beings with the horrible characteristics their principle assigns to “ghosts”?

Why are many people hesitant about research with human embryos? I have no definitive answer, but doubt that it is due to some folk-metaphysical doctrines about the status of the embryo. Perhaps it is more related to the fact that the embryo is associated with so much that is significant to us. It is associated with pregnancy, birth, children, family life, life and death. The connection to these intimate aspects of life means that we, without necessarily having the view that embryo research is wrong, can feel hesitant.

The question is: How do we take such moral hesitation seriously? How do we reject delusions and calm ourselves down when the intellect starts to present us with horrible scenarios that certainly would motivate anxiety? How do we do it without smoothing things over or acting like faultfinders?

I believe that bioethics should above all avoid intellectualizing people’s moral concerns; stop representing moral hesitation as the outcome of metaphysical reasoning. If people do not worry because of folk-metaphysical doctrines about the embryo, then we have no reason to debate the status of the embryo. Instead, we should begin by asking ourselves: Where does our hesitation come from?

That would mean taking ourselves seriously.

Pär Segerdahl

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