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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Moral panic in the intellect

September 6, 2017

Pär SegerdahlMoral panic develops intellectually. It is our thoughts that are racing. Certain mental images make such a deep impression on us that we take them for Reality, for Truth, for Facts. Do not believe that the intellect is cold and objective. It can boil over with agitated thoughts.

This is evident in bioethics, where many issues are filled with anguish. Research information about cloned animals, about new techniques for editing in the genome, or about embryonic stem cell research, evoke scary images of subversive forms of research, threatening human morality. The panic requires a sensitive intellect. There, the images of the research acquire such dimensions that they no longer fit into ordinary life. The images take over the intellect as the metaphysical horizon of Truth. Commonplace remarks that could calm down the agitated intellect appear to the intellect as naive.

A science news in National Geographic occasions these musings. It is about the first attempt in the United States to edit human embryos genetically. Using so-called CRISPR-Cas9 technique, the researchers removed a mutation associated with a common inherited heart disease. After the successful editing, the embryos were destroyed. (You find the scientific article reporting the research in Nature.)

Reading such research information, you might feel anxiety; anxiety that soon takes possession of your intellect: What will they do next? Develop “better” humans who look down on us as a lower species? Can we permit science to change human nature? NO, we must immediately introduce new legislation that bans all genetic editing of human embryos!

If the intellect can boil over with such agitated thoughts, and if moral panic legislation is imprudent, then I believe that bioethics needs to develop its therapeutic skills. Some bioethical issues need to be treated as affections of the intellect. Bioethical anxiety often arises, I believe, when research communication presents science as the metaphysical horizon of truth, instead of giving science an ordinary human horizon.

It may seem as if I took a stand for science by representing critics as blinded by moral panic. That is not the case, for the other side of moral panic is megalomania. Hyped notions of great breakthroughs and miraculous cures can drive entire research fields. Mental images that worry most people stimulate other personalities. Perhaps Paolo Macchiarini was such a personality, and perhaps he was promoted by a scientific culture of insane mental expectations on research and its heroes.

We need a therapeutic bioethics that can calm down the easily agitated intellect.

Pär Segerdahl

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Are you a person or an animal?

August 30, 2017

Pär SegerdahlThe question in the title may sound like an insult. That is, not as a question, but as something one might say in anger to reprimand someone who misbehaves.

In philosophy, the question is asked seriously, without intention of insulting. A philosopher who misbehaves at a party and is reprimanded by another guest – “Are you a person or an animal?” – could answer, shamelessly: Eh, I really don’t know, philosophers have contemplated that question for hundreds of years.

What then is the philosophical question? It is usually described as the problem of personal identity. What are we, essentially? What constitutes “me”? What holds the self together? When does it arise and when does it disappear?

According to proponents of a psychological view, we (human beings) are persons with certain psychological capacities, such as self-awareness. That psychology holds the self together. If an unusual disease made my body deteriorate, but doctors managed to transplant my mental contents (self-awareness, memories, etc.) into another body, then I would survive in the other body. According to proponents of the rival, animalist view, however, we are animals with a certain biology. An animalist would probably deny that I could survive in a foreign body.

The difference between the two views can be illustrated by their consequences for a bioethical question: Is it permissible to harvest organs from brain-dead bodies to use as transplants? If we are essentially persons with self-awareness, then we cease to exist when the brain dies. Then it should be permissible to harvest organs; it would not violate personal autonomy. If we are animals with a certain biology, however, harvesting organs may appear as using citizens as mere means in healthcare.

In an article in Ethics, Medicine and Public Health, Elisabeth Furberg at CRB questions these views on identity. She argues that both views are anthropocentric. This is easy to see when it comes to the view that we are essentially persons. The psychological view exaggerates the importance of certain supposedly unique human psychological capacities (such as the capacity for a first-person perspective), and underestimates the psychological capacities of non-human animals. According to Furberg, however, even the animalist view is anthropocentric. How!?

How can an outlook where we are essentially animals be anthropocentric? Well, because the very concept “animal” is anthropocentric, Furberg argues. It originated as a contrast to the concept “human.” It distinguishes us (morally advanced beings) from them (less worthy creatures of nature). The animalist view is unaware of its own anthropocentric bias, which comes with the concept “animal.”

At the end of the article, Furberg proposes a less anthropocentric view on identity, a hybrid view that combines the psychological and animalistic answers to the question in the title. The hybrid view is open to the possibility that even animals other than humans can have psychological identity, such as chimpanzees. If I understand Furberg correctly, she would say that many animals are just animals. A snail is identical to the snail. It has no psychological identity that could survive in another snail body. Nevertheless, a number of animals (not just humans) have an identity that goes beyond their animality. Chimpanzees and humans, and probably some other species, are such animals.

I cannot resist mentioning that I have written an article about similar issues: Being human when we are animals. There, I do not purify a metaphysical question from an insult, but investigate the insult, the reprimand.

Pär Segerdahl

Furberg, E. 2017. “Are we persons or animals? Exposing an anthropocentric bias and suggesting a hybrid view.” Ethics, Medicine and Public Health (3): 279-287

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We philosophize when we do not know how to think

August 14, 2017

Pär SegerdahlPhilosophers are also called thinkers. We easily believe that philosophers are specialists in thinking, as linguists are specialists in speech and writing. If someone knows how to think, it must be a philosopher, we think.

I believe we are wrong to think philosophers know how to think. Rather, they are people who know when we do not know how to think. They acknowledge (for all of us) when we do not know how to think (although we thought we knew). Such confessions probably need to me made more often!

If you think you know how to think about immigration, or about stem cell research, then you have an opinion. The opinion may be substantiated, but it hardly makes you a thinker, but rather a molder of public opinion. Since you already know how to think, you do not have to think. You only need to keep on talking, according to what you believe you know.

“I need more time to think about it; I don’t know how I should think.” We fail to notice that there is a way of thinking that begins the very moment we do not know how to think. At that moment, the philosophical dimension of thinking opens up.

When you know how to think, you no longer think. Not in the philosophical sense. If you meet an argumentative chatterbox, or a schoolmasterly specialist in thinking, you can be sure it is not a philosopher.

Pär Segerdahl

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