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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Commercialization, but not at any price

February 14, 2017

Pär SegerdahlIn 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.

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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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Ethics and law of stem cell treatment of diabetes

December 21, 2016

Pär SegerdahlMany people support in various ways medical research, which they perceive as urgent in view of the needs of various patient groups. But patients typically won’t benefit from research unless the results are translated into development of medical products.

Type 1 diabetes is an incurable disease that requires daily life-sustaining treatment and strict dietary rules. Disease onset usually occurs at an early age.

In Sweden, about 50 000 people have this form of diabetes and of these around 8 000 are children. In type 1 diabetes, the immune system attacks the insulin-producing cells. Without insulin the body cells cannot use glucose for energy, and the sugar level in the blood rises. Energy is recovered instead from fat and protein, which causes waste products that can cause diabetic coma and attacks on vital organs.

Today, diabetes is treated with daily insulin injections, or by using an insulin pump. This requires continuous measurement of blood sugar levels, as incorrect doses of insulin entails risks and can be life-threatening. It is not easy to live with diabetes.

An alternative treatment, which is still at the research stage, is to generate new insulin-producing cells using human embryonic stem cells. The insulin-producing cells detect blood sugar levels and regulate the secretion of insulin. In order not to be attacked by the immune system, the transplanted cells are encapsulated in a protective material. It may become easier to live with diabetes.

But research alone doesn’t treat diabetes. Encapsulated insulin-producing cells need to be produced and made available also to patients; not only to research participants. But this is a big step and a host of ethical and legal issues, including embryo donation, patentability and consent, need to be examined and discussed.

The Swedish Research Council recently granted funding for a project to examine these issues. The project is led by Mats G. Hansson at CRB and is a collaboration with Olle Korsgren, professor of transplantation immunology, as well as with lawyers Anna-Sara Lind and Bengt Domeij, and philosophers and ethicists Jessica Nihlén Fahlquist and Pär Segerdahl.

The step from stem cell research to available treatments requires reflection. I look forward to start thinking about the ethical and philosophical questions.

Pär Segerdahl

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Research data, health cyberspace and direct-to-consumer genetic testing

December 14, 2016

josepine-fernow2We live in a global society, which means there are several actors that regulate both research and services directed at consumers. It is time again for our newsletter on current issues in biobank ethics and law. This time, Biobank Perspectives  lets you read about the legal aspects of direct-to-consumer genetic testing. Santa Slokenberga writes about her doctoral dissertation in law from Uppsala University and how the Council of Europe and the EU interact with each other and the legal systems in the member states. She believes direct-to-consumer genetic testing can be seen as a “test” of the European legal orders, showing us that there is need for formal cooperation and convergence as seemingly small matters can lead to large consequences.

We also follow up from a previous report on the General Data Protection Regulation in a Swedish perspective with more information about the Swedish Research Data Inquiry. We are also happy to announce that a group of researchers from the University of Oxford, University of Iceland, University of Oslo and the Centre for Research Ethics & Bioethics at Uppsala University received a Nordforsk grant to find solutions for governance of the “health cyberspace” that is emerging from assembling and using existing data for new purposes. To read more, download a pdf of the latest issue (4:2016), or visit the Biobank Perspectives site for more ethical and legal perspectives on biobank and registry research.

Josepine Fernow

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Approaching future issues - the Ethics Blog


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