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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Stem cell therapy remains a form of treatment

February 27, 2017

Pär SegerdahlThere 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

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Not just facts, ideas are also needed

February 8, 2017

Pär SegerdahlWhen 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

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How should we think about it?

January 24, 2017

Pär SegerdahlMuch 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

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The pharmaceutical industry and altruism

January 16, 2017

Pär SegerdahlI 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

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The brain develops in interaction with culture

November 16, 2016

Pär SegerdahlThe brain develops dramatically during childhood. These neural changes occur in the child’s interaction with its environment. The brain becomes a brain that functions in the culture in which it develops. If a child is mistreated, if it is deprived of important forms of interaction, like language and care, the brain is deprived of its opportunities to develop. This can result in permanent damages.

The fact that the brain develops in interaction with culture and becomes a brain that functions in culture, raises the question if we can change the brain by changing the culture it interacts with during childhood. Can we, on the basis of neuroscientific knowledge, plan neural development culturally? Can we shape our own humanity?

In an article in EMBO reports, Kathinka Evers and Jean-Pierre Changeux discuss this neuro-cultural outlook, where brain and culture are seen as co-existing in continual interplay. They emphasize that our societies shape our brains, while our brains shape our societies. Then they discuss the possibilities this opens up for ethics.

The question in the article is whether knowledge about the dynamic interplay between co-existing brains-and-cultures can be used “proactively” to create environments that shape children’s brains and make them, for example, less violent. Environments in which they become humans with ethical norms and response patterns that better meet today’s challenges.

Similar projects have been implemented in school systems, but here the idea is to plan them on the basis of knowledge about the dynamic brain. But also on the basis of societal decision-making about which ethics that should be supported; about which values that are essential for life on this planet.

Personally I’m attracted by “co-existence thinking” as such, which I believe applies to many phenomena. For not only the brain develops in interaction with culture. So does plant and animal life, as well as climate – which in turn will shape human life.

Maybe it is such thinking we need: an ethics of co-existence. Co-existence thinking gives us responsibilities: through awareness of a mistreated nature; through awareness of our dependence on this nature. But such thinking also transcends what we otherwise could have imagined, by introducing the idea of possibilities emerging from the interplay.

Do not believe preachers of necessity. It could have been different. It can become different.

Pär Segerdahl

Evers, K. & Changeux, J-P. 2016. “Proactive epigenesis and ethical innovation: A neuronal hypothesis for the genesis of ethical rules.” EMBO reports 17: 1361-1364.

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What is the risk?

November 2, 2016

Pär SegerdahlTo communicate about genetic risk with patients, we need to know how people think about risk and that experts and people in general often think differently.

A common feature, however, is this: Risk has to do with future adverse events. We talk about the risk of getting sick. But we rarely talk about the risk of getting well. We must then imagine people who value their disease (perhaps to avoid enrollment in an occupation army).

The expert’s concept of risk presupposes the negative value, but does not delve into it. It focuses on the probability that the unwanted event will happen (and how certain/uncertain the probability is).

For patients, however, the value aspect probably is more in focus. A couple learning about a 25% risk of having a child with a certain disability probably considers how bad such impairment would be: for the child and themselves. Maybe it isn’t so bad? Perhaps there is no great “risk” at all! They evaluate the risk scenario rather than calculate the probability.

How can we understand this value aspect, which risk presupposes and patients ponder? Ulrik Kihlbom at CRB asks the question in an article in the Journal of Risk Research.

Kihlbom describes two common ways of understanding value. The first is in terms of preferences. People have different preferences. Most prefer health before sickness, but occasionally someone may prefer disease. Value lies in satisfying these preferences, whatever they are. There is then only one value: preference satisfaction. The problem is that we can object that these preferences are not always reasonable or well informed. Additionally, patients can adapt to their illness and prefer their lives as much as healthy persons prefer their lives. Is it valuable to satisfy even such preferences?

Not surprisingly, the other way of understanding value is more objective. Here one assumes that value depends on how well certain basic human capabilities are supported. Such as being able to use one’s senses, imagine, think, play, be healthy, etc. Here there is a more objective measure of value. The problem is the authority the measure is given. May not a person lack some of these capabilities and still live a full and dignified life? Who decides which capabilities should belong to the measure?

Actually, I would say that both proposals impose a measure of value. Preference satisfaction is, of course, a general measure too.

Kihlbom proposes a third way of understanding value. No measure of value is imposed and value is not separated from that which has value. If someone gets cancer, the negative value lies already in the disease, so to speak. A person who knows what cancer is does not ask: “Why is it bad to get cancer?” And hardly anybody would answer: “Because it frustrates my preferences” or “Because it prevents me from flourishing as a human being.”

Knowing what disease is means knowing that it is bad. It is part of the point of the word. To exclaim, “I’m so sick!” is to complain (not to rejoice). The value lies in the phenomenon itself and in the word. If some people still value their disease (perhaps to avoid military service), the value lies in the situation where the disease can appear as a good thing.

This is probably how people approach genetic risk information: What does this mean in my life? How bad is it? They immerse themselves in the value aspect, which the numerical probability presupposes. The 25-percent risk of having a child with a certain disability leads to concerns over what such a life might turn out to be like; how it can be described; how it can be valued.

So what should we keep in mind in genetic risk communication? The novelty about genetic risk information is not only that patients get difficult to interpret percentages of probability. The scenarios are new. These scenarios can involve time perspectives that extend throughout one’s future life, even to future generations. They can be about diseases and treatments that we do not know what it means to live with.

We evaluate risks daily (like the risk of missing the train), but here patients encounter novel risk scenarios that are difficult to evaluate. If I understand Kihlbom right, he thinks that the challenge is not only to explain probabilities to patients. The challenge is not least that of talking with patients about these new risk scenarios: about how they react to them in terms of value, how they describe them as “catastrophic” or “not so bad.”

Patients need support to evaluate genetic risk scenarios reasonably; not only to understand probabilities.

Pär Segerdahl

Kihlbom, U. 2016. “Genetic Risk and Value.” Journal of Risk Research, DOI: 10.1080 / 13669877.2016.1200653

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