Fear of the unknown produces ghosts

April 26, 2017

Pär SegerdahlWhat really can start feverish thought activity is facing an unclear threat. We do not really see what it is, so we fill the contours ourselves. At the seminar this week, we discussed what I think was such a case. A woman decided to test if she possibly had calcium deficiency. To her surprise, the doctor informed her that she suffered from a disease, osteoporosis, characterized by increased risk of bone fractures.

She already had experienced the problem. A hug could hurt her ribs and she had broken a shoulder when pushing the car. However, she felt no fear until she was informed that she suffered from a disease that meant increased risk of bone fracture.

I do not mean she had no reason to be worried. However, her worries seem to have become nightmarish.

Presumably, she already understood that she had to be careful in some situations. However, she interpreted the “risk factor” that she was informed about as an invisible threat. It is like a ghost, she says. She began to compare her body with a house where the foundation dissolves; a house which might therefore collapse. She began to experience great danger in every activity.

Many who are diagnosed with osteoporosis do not get fractures. If you get fractures, they do not have to be serious. However, the risk of fractures is greater in this group and if you get a hip fracture, that is a big problem. The woman in the example, however, imagined her “risk factor” as a ghost that constantly haunted her.

I now wonder: Are ethical debates sometimes are about similar ghost images? Most of us do not really know what embryo research is, for example, it seems vaguely uncanny. When we hear about it, we fill the contours: the embryo is a small human. Immediately, the research appears nightmarish and absolute limits must be drawn. Otherwise, we end up on a slippery slope where human life might degenerate, as the woman imagined her body might collapse.

I also wonder: If debates sometimes are about feverishly produced ghost images, how should we handle these ghosts? With information? But it was information that produced the ghosts. With persistent logical counter arguments? But the ghosts are in the feverish reasoning. Should we really continue to fill the contours of these images, as if we corrected bad sketches? Is it not taking ghosts too seriously? Is it not like trying to wake up yourself in a dream?

Everything started with the unclear threat. The rest were dreamlike consequences. We probably need to reflect more cautiously on the original situation where we experienced the first vague threat. Why did we react as did? We need to treat the problem in its more moderate beginning, before it developed its nightmarish dimensions.

This is not to say that we have no reason to be concerned.

Pär Segerdahl

Reventlow, S., Hvas, A. C., Tulinius, C. 2001. “In really great danger.” The concept of risk in general practice. Scandinavian Journal of Primary Health Care 19: 71-75

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Trusting yourself

April 18, 2017

Pär SegerdahlTrusting yourself, what does it mean? It can of course mean thinking that you always know best, trusting your strength to prevail over whoever and whatever you may meet in life.

There is another form of trust in yourself, where you trust your uncertainty rather than your certainty. You respond to your uncertainty not by accusing yourself, but by taking a deep breath and saying: this is difficult. I would not be so uncertain if it was not for the fact that I have come across something that truly requires caution, reflection, and long-term investigation.

It sounds humble when Socrates says that the only thing he knows is that he knows nothing. Or when it is said that wisdom lies in the recognition that one is not wise. In a sense, it is humble. However, this form of humility also exhibits self-reliance. One is uncertain not because one is unusually stupid but because some things are unusually difficult. Life sometimes surpasses the intellect.

People who trust their uncertainty express it as honest questions, instead of hiding it behind clever arguments and theses. When they express their uncertainty as questions, their work can begin. The uncertainty is then their only certainty. It shows them there is something worthy of investigation. It shows them the way, through sincere questions and rejections of premature solutions.

Sometimes weakness is a strength. Socrates relied on it. Researching persons do.

Pär Segerdahl

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Sliding down along the slippery slope

April 11, 2017

Pär SegerdahlDebates on euthanasia, abortion or embryonic stem cell research frequently invoke slippery slope arguments. Here is an example of such reasoning:

Legalizing physician-assisted suicide (PAS) at the end of life pushes healthcare morality in a dangerous direction. Soon, PAS may be practiced even on people who are not at the end of life and who do not request it. Even if this does not happen, the general population’s trust in healthcare will erode. Therefore, PAS must be forbidden.

Reasoning about the future is important. We need to assess consequences of allowing new practices. However, how do we assess the future in a credible way?

In an article in Medicine, Health Care and Philosophy, Gert Helgesson, Niels Lynøe and Niklas Juth argue that many slippery slope arguments are not empirically substantiated, but are based on value-impregnated factual assumptions. Anyone who considers PAS absolutely wrong considers it as a fatal step in a dangerous direction. Therefore, it is assumed that taking such a step will be followed by further steps in the same dangerous direction. If you chose the wrong path, you end up further and further away in the wrong direction. It seems inevitable that a first step is followed by a second step…

The problem is that this prophesying is based on the original moral interpretation. Anyone who is not convinced of the fatality of a “first” step does not have a tendency to see it as a “first step” with an inherent tendency to lead to a “second step” and finally to disaster.

Thinking in terms of the slippery slope can sometimes be experienced as if you yourself were on the slippery slope. Your thoughts slide toward the daunting precipice. Perhaps the article by Helgesson, Lynøe and Juth contains an analysis of this phenomenon. The slippery slope has become a vicious circle where the prophesying of disastrous consequences is steered by the moral interpretation that one defends with reference to the slippery slope.

Slippery slope arguments are not wrong in themselves. Sometimes development is on a slippery slope. However, this form of reasoning requires caution, for sometimes it is our thoughts that slide down along the slippery slope.

And that can have consequences.

Pär Segerdahl

Helgesson, G., Lynøe, N., Juth, N. 2017. Value-impregnated factual Claims and slippery slope arguments. Medicine, Health Care and Philosophy 20: 147-150.

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The New Yorker features resignation syndrome

March 29, 2017

Pär SegerdahlLast year I wrote a post about resignation syndrome in children in families who are denied asylum in Sweden. I described a hypothesis about the syndrome suggested by Karl Sallin, PhD student at CRB in the field of neuroethics and neurophilosophy.

An intuitive explanation is that the syndrome is a reaction to prolonged stress and depression. A reaction that is triggered when the family is denied asylum. However, if the explanation is correct, the syndrome should exist on a similar scale also in other countries that receive refugee families. It seems it does not.

To understand what happens to these children, we should, Karl Sallin suggested, see it as a psychological reaction that occurs in the meeting between certain cultures and Swedish cultural conditions. For another peculiarity is the fact that the syndrome occurs mainly in families from certain parts of the world. We are dealing with a culture bound psychopathology, Sallin proposed in Frontiers in Behavioral Neuroscience.

The New Yorker recently wrote about this “Swedish” syndrome, in a long article in which Karl Sallin interviewed.

The article contains a touching description of how one of these children falls ill when the family is denied asylum. For several months, he is confined to bed, not contactable, and he must be tube fed. When the family gets permanent residence, they try to convey this to the boy. After two weeks, he begins to open his eyes. After a further seven weeks, the nasal tube taped to his cheek falls out. Finally, he can return to school and begin to talk about the disease.

The article in The New Yorker emphasizes that the syndrome is a culture-bound psychopathology. However, the tendency seems to be to point out Sweden’s crumbling self-image as the relevant cultural context for the disease. We see “apathetic refugee children” as symbols of our own moral failure to treat them and their families humanely. Therefore, we tube feed them without further treatment, while waiting for the family to hopefully get their residence permit. This creates a culture where children become sick when their families are denied asylum.

This can hardly be the whole explanation, since it then becomes difficult to understand why mainly children from certain parts of the world are afflicted. Moreover, mainly children who come together with their families, rather than unaccompanied refugee children. The cultural dynamics seems to be more complex than the desire to find scapegoats for the syndrome can handle.

Pär Segerdahl

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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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More biobank ethics and law

March 13, 2017

Biobank and registry research comes with particular sets of legal and ethical issues. We explore some of them in our Biobank Perspectives newsletter.

In this issue, you can read about some of the challenges that arise when biobanking stem cells in relation to a new project on the legal and ethical aspects of using stem cells to treat type 1 diabetes. We also offer a progress update from the B3Africa project and present the new Swedish legal officer BBMRI-ERIC ELSI helpdesk.  You can also read about the Swedish Government Inquiry  that was presented recently, proposing a new legal framework for handling and investigating research misconduct, with a new act suggested to enter into force on 1st of January 2019.

Josepine Fernow & Anna-Sara Lind

We recommend readings - the Ethics Blog


Stem cells: unique biobank material?

March 7, 2017

Pär SegerdahlStem cells are perhaps not what first springs to mind as biobank material. Yet, even stem cells can be biobank material and there are biobanks that focus on stem cells. The use of this biobank material, however, has some unique features.

Stem cell researchers process not only data from human material. The material itself is “processed” and sometimes transplanted to research participants. Commercializing stem cell research moreover implies that cells derived from donated human tissue appear in products on a market. This gives rise to ethical and legal questions.

Does the law allow patenting cell lines derived from human donated material? Is buying and selling such material lawful? Another issue concerns research participants’ right to withdraw their consent at any time. Human embryonic stem cell research uses stem cells from donated spare embryos from IVF treatment. How far does embryo donors’ right to withdraw consent stretch? Must transplanted devices with matured cells be removed from research participants, if the embryo donor withdraws consent? Moreover, assuming that researchers share stem cell lines with companies, are these companies willing to invest in the development of stem cell products if embryo donors may withdraw their consent at any time?

Another difficulty is the purpose to which embryo donors are asked to consent. According to the law, human embryos can be donated only for research purposes (or to other IVF patients). Yet, medical research loses its meaning if results cannot be commercialized. It cannot then reach patients. It is important to inform donors about this broader context of embryo donation. Does that information imply that the consent becomes broader than has support in the law? Or is there support since embryos are not used in product development, only derived material?

The answers to these questions probably depend on whether one can distinguish between donated embryos and cell material derived from embryos (using various inventions). This raises also more philosophical questions about how to view embryos, stem cell lines, matured cells, and human tissue.

Pär Segerdahl

An earlier version of this text was published in Biobank perspectives.

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