Year: 2017 (Page 3 of 3)

Sliding down along the slippery slope

11 April, 2017 / Pär Segerdahl / 0 Comments

Debates 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.

This post in Swedish

The New Yorker features resignation syndrome

29 March, 2017 / Pär Segerdahl / 0 Comments

Last 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

This post in Swedish

Consent based on trust rather than information?

21 March, 2017 / Pär Segerdahl / 0 Comments

Consent 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

This post in Swedish

More biobank ethics and law

13 March, 2017 / Pär Segerdahl / 0 Comments

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

Stem cells: unique biobank material?

7 March, 2017 / Pär Segerdahl / 0 Comments

Stem 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.

This post in Swedish

Stem cell therapy remains a form of treatment

27 February, 2017 / Pär Segerdahl / 0 Comments

There is a picture of stem cell therapy: It is in harmony with the body’s own way of functioning. Damaged tissue is regenerated as the body always regenerates tissue: through stem cells maturing into new body cells.

Patients can then hope for a body without a trace of disease: a healed body that takes care of itself as a healthy body does. It is almost as if we were not dealing a treatment at all, for the body restores itself, as it always does.

Stem cell therapy is certainly an important step towards effective treatment of several currently incurable diseases. The methods can also be said to be based on the body’s own way to regenerate tissue.

Nevertheless, I think we should emphasize that stem cell therapies are treatments next to others, with risks and benefits. Cells are transplanted into patients whose immune system can react. The implants may need to be checked regularly, or even be replaced. The transplantation can go wrong. And so on.

Stem cell therapy does not “transcend” all disease treatment hitherto by supporting the body’s own way of healing itself. We are still dealing with treatments of patients, rather than with “salvation from disease.”

Rhetoric of salvation is dangerous. It invites magicians and our faith in them. It justifies sacrifices to the benefit of Mankind. It disturbs our judgement.

Pär Segerdahl

This post in Swedish

Commercialization, but not at any price

14 February, 2017 / Pär Segerdahl / 0 Comments

In a previous post, I tried to make the point that the pharmaceutical industry can support altruism between research participants and patients, despite the fact that the industry itself is not altruistic but is driven by profit. Medical research will not benefit patients, unless results are developed into commercially available treatments.

However, this presupposes, of course, that pricing is reasonable, so that we can actually afford the drugs. Otherwise, research and research participation become meaningless.

Today, I just want to recommend an article in the journal Cell, where the authors argue that the prices of new cancer drugs have become indefensibly high. They propose new collaborations between academic researchers and small companies, to offer cancer drugs at more reasonable prices. Researchers should ensure that the companies they work together with are willing to sell the drugs with smaller profit margins.

You can find a summary of these ideas in The Guardian.

Pär Segerdahl

Workman, P. Draetta, G. F., Schellens, J. H. M., Bernards, R. (2017). How much longer will we put up with $100,000 cancer drugs? Cell 168: 579-583.

This post in Swedish

Not just facts, ideas are also needed

8 February, 2017 / Pär Segerdahl / 0 Comments

When fraudulent “academic” journals publish articles without proper peer review. When websites online spread fake information. When politicians talk about alternative facts. Then undeniably, one feels a need for a general tightening up.

A possible problem in this reaction is that we castrate ourselves. That we don’t dare to propose and discuss ideas about the situation we are in. That we don’t dare to think, interpret and analyze. Because we fear being found guilty of error and of contributing to the scandalous inflation of facts and truths.

We hide ourselves in a gray armor of objectivity. In order not to resemble what we react to.

But why do these tendencies occur now? Is it about the internet? Is it about neglected groups of citizens? Is it about economic and political shifts in power?

In order to understand this complex situation and act wisely, we need not just facts but also good questions, thoughts, interpretations and analyses of the situation. If we take that task seriously, we also take relevant facts seriously when we discuss the ideas.

If we react with hypercorrection, with an armor of correctness, we risk repressing our questions about how we should think about our situation. We repress our uncertainty: the motive for thinking, interpreting and analyzing.

Pär Segerdahl

This post in Swedish

How should we think about it?

24 January, 2017 / Pär Segerdahl / 0 Comments

Much debated issues tend to be about how we should view important matters that are also multi-faceted. The school system is important. But there are many ways of thinking about the importance of education; many ways of reasoning about how it should be designed to carry out the important tasks that we think it has.

So how should we think about it?

The question is reflexive. It is about the matter, but also about how the matter should be described. How should we reflect important things in our ways of reasoning about them? It is in this reflexive dimension that we are debating school, health care, freedom of speech, or the ethics of stem cell research. It is a difficult to navigate dimension. We easily go astray in it, but we can also try to find our way in it and become wiser.

Philosophers have felt particularly responsible for this reflexive dimension. They have been thinking about how we think about things, if I may put it that way. They have been thinking about thinking. I do it now, by trying to understand debated issues in terms of a difficult to navigate reflexive dimension. I do not know how successful my attempt is. The risk is that what I call a reflexive dimension appears like a separate realm of pure ideas about things (absolute principles for how we should think).

I do not want to reinvent Platonism. I just want to point out that when we debate something, we reason not only about the matter, but also about how we reason about it. We work on ourselves. Debates that lack such self-awareness tend to be dogmatic and less fruitful.

A name for work on self-awareness could be self-criticism, or thinking. I believe it makes a difference if conversations in a society are marked by the attitude that “the matter” also includes ourselves. Responsibility has its origin in that attitude.

Pär Segerdahl

This post in Swedish

The pharmaceutical industry and altruism

16 January, 2017 / Pär Segerdahl / 0 Comments

I am currently thinking about a common gut reaction to the pharmaceutical industry. I sometimes have this reaction too, so this is an examination of my own reaction.

The reaction is a feeling of discomfort, when a central actor in the management of something as important as human health and disease is a multibillion-dollar industry with profit as overall goal.

Is it really possible to combine such a businesslike aim with a genuine desire to cure the sick?

Let us compare with another industry that radiates more compassionate desire to cure, namely, alternative medicine. Here too products are sold to people with various ailments. There is clearly a market and a business mindset. Yet the actors on this market radiate more love of mankind. It can sometimes even appear as if the products were manufactured and sold out of pure goodness!

What makes these business practices seem imbued with good will to cure? I suggest that it depends on the strong belief in the healing effects of the products. I do not deny that many of the products have beneficial effects. My point is only that beliefs about good effects are at the forefront and can make the provision of the products appear like an ethical act of noble actors.

The pharmaceutical industry is different from alternative medicine partly through being prohibited from being permeated with beliefs about the healing effects of the products. It is actually illegal for the pharmaceutical industry to act as nobly and compassionately as the actors within alternative medicine. It could invite quackery.

The pharmaceutical industry operates on a highly regulated market. There is specific legislation for pharmaceutical products and special authorities supervising the industry. Satisfying the quality and safety demands often requires decades of research and development. This means huge investment costs, which presupposes profits.

This is how we have solved the problem of providing safe and effective treatments through the health care system. By having a pharmaceutical industry that is not permeated with good faith and good intentions, but instead is highly regulated and supervised. The products must satisfy the quality requirements, period. Beliefs and good intentions are irrelevant.

Research, industry and healthcare together constitute a regulated system for managing health and disease. Within this system, researchers can be driven by curiosity, and industry by profit, while doctors want to cure their patients, and research participants want to support research that could lead to more effective treatments.

The point I am trying to make is that the gut reaction probably overlooks just this division of motives: In order for a whole system to work for the good, not every actor in the system needs to place good intentions first. It can rather pose a risk for the entire system.

There is no reason to glorify the pharmaceutical industry. Rather there are reasons to question it, for example, the marketing of products, which sometimes tries to create the faith that is prohibited in the development and approval of the products.

The industry is not altruistic. It is driven by profit. But through its place within the system it can make altruism and good will possible.

Pär Segerdahl

This post in Swedish

Year: 2017 (Page 3 of 3)

Sliding down along the slippery slope

The New Yorker features resignation syndrome

More biobank ethics and law

Stem cell therapy remains a form of treatment

Commercialization, but not at any price

Not just facts, ideas are also needed

How should we think about it?

The pharmaceutical industry and altruism

Welcome to the Ethics Blog!

Meet the editor

Follow the Ethics Blog via e-mail

Search this site

Recent posts

Interested in the Swedish debate?

Recent Comments

Welcome to the Ethics Blog!

Meet the editor

Follow the Ethics Blog via e-mail

Search this site

Recent posts

Interested in the Swedish debate?

Keywords in this blog

Recent Comments