Tag: future prospects (Page 5 of 10)

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.

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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.

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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

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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.

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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

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Ethics and law of stem cell treatment of diabetes

21 December, 2016 / Pär Segerdahl / 0 Comments

Many 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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The apparent academy

29 November, 2016 / Pär Segerdahl / 0 Comments

What can we believe in? The question acquires new urgency when the IT revolution makes it easier to spread information through channels that obey other laws than those hitherto characterizing journalism and academic publishing.

The free flow of information online requires a critical stance. That critical stance, however, requires a certain division of labor. It requires access to reliable sources: knowledge institutions like the academy and probing institutions like journalism.

But what happens to the trustworthiness of these institutions if they drown in the sea of impressively designed websites? What if IT entrepreneurs start what appear to be academic journals, but publish manuscripts without serious peer review as long as the researchers are paying for the service?

This false (or apparent) academy is already here. In fact, just as I write this, I get by email an offer from one of these new actors. The email begins, “Hello Professor,” and then promises unlikely quick review of manuscripts and friendly, responsive staff.

What can we do? Countermeasures are needed if what we call critical reflection and knowledge should retain their meaning, rather than serve as masks for something utterly different.

One action was taken on The Ethics Blog. Stefan Eriksson and Gert Helgesson published a post where they tried to make researchers more aware of the false academy. Apart from discussing the phenomenon, they listed deceptive academic journals to which unsuspecting bioethicists may submit papers (deceived by appearances). They also listed journals that take academic publishing seriously. The lists will be updated annually.

In an article in Medicine, Health Care and Philosophy (published by Springer), Eriksson and Helgesson deepen their examination of the false academy. Several committed researchers have studied the phenomenon and the article describes and discusses what we know about these questionable activities. It also proposes a list of characteristics of problematic journals, like unspecified editorial board, non-academic advertisement on the website, and spamming researchers with offers to submit manuscripts (like the email I received).

Another worrying trend, discussed in the article, is that even some traditional publishers begin to embrace some of the apparent academy’s practices (for they are profitable). Such as publishing limited editions of very expensive anthologies (which libraries must buy), or issuing journals that appear to be peer reviewed medical journals, but which (secretly) are sponsored by drug companies.

The article concludes with tentative suggestions on countermeasures, ranging from the formation of committees that keep track of these actors to stricter legislation and development of software that quickly identifies questionable publications in researchers’ publication lists.

The Internet is not just a fast information channel, but also a place where digital appearance gets followers and becomes social reality.

Pär Segerdahl

Eriksson, S. & Helgesson, G. 2016. “The false academy: predatory publishing in science and bioethics.” Medicine, Health Care and Philosophy, DOI 10.1007/s11019-016-9740-3

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The brain develops in interaction with culture

16 November, 2016 / Pär Segerdahl / 0 Comments

The 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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How to listen to (the right) patient voices? (By Ulrik Kihlbom)

25 October, 2016 / Pär Segerdahl / 0 Comments

We all think patients’ voices are important. But how do we make sure we listen to the right ones? Patient engagement and patient perspectives have come into focus in health care in recent years. Though this is especially true for the clinical setting, this development can be expected to continue for decision-makers at other levels.

We are just starting to research these questions in a project called PREFER. The aim is to establish which methods to use to bring in patient perspectives into important decisions regarding medical drugs; decisions made by different stakeholders, such as physicians, regulatory and reimbursement authorities, and the industry. In short: how and when should decision makers listen to the patients?

But, how can we make sure that the methods enable decision-makers to listen to the right patient voices?

Now, the expression “the right patient voices” should plausibly be understood as comprising several aspects such as being representative of the actual views patients have, being adequately informed, and as being non-biased. Each of these aspects require thorough consideration and also methodological development. I am myself responsible for one task that will specifically address these questions. One of the many intriguing issues here is when, during the process of falling ill, coming under treatment, and hopefully convalescing, a patient’s voice should be listened to? The patient’s preferences will probably change during the trajectory of illness. Imagine that you fall seriously ill, are treated and recover, and suppose also that your preferences for a risky treatment change during this period of time. Do you know when your preferences are such that your physician should listen to them? And when they merit less attention? I am myself far from sure how to answer this question.

Another set of questions concerns how the (right) patient perspective should be incorporated into the decision making. How, for example should a reimbursement authority weigh the patient perspective against cost-effectiveness when making a decision of subsidising a medical drug? Or how should a regulatory authority, such as EMA in Europe, FDA in the US, and Läkemedelsverket in Sweden, weigh patient effectiveness against safety concerns? It seems fair to say that everybody agrees that the patient perspective should have a weight, but no one has an established scale.

These are some of the very hard and intriguing questions that the PREFER project will address over the coming five years. 33 partners from academic institutions, patient organisations, health technology assessment bodies, small companies and the pharmaceutical industry are putting their heads, competence and resources together. Uppsala University is coordinating the project, with CRB’s director Mats G. Hansson at the helm. Apart from me and Mats, Josepine Fernow, Elisabeth Furberg, Jorien Veldwijk and Karin Schölin Bywall at CRB are involved in PREFER. We are looking forward to interesting research questions, but also to learning by working in, and leading, a public-private partnership of this size.

In the autumn of 2021, the project will issue recommendations. By then we will know better how decision makers may find and listen to the (right) patient voices. And how patients’ voices can make themselves heard in the decisions of regulators, health technology assessment bodies, reimbursement agencies, and pharmaceutical companies.

Ulrik Kihlbom

About PREFER: The Patient Preferences in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 115966. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA. The contents of this text reflects the author’s view and not the view of IMI, the European Union or EFPIA.

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Tag: future prospects (Page 5 of 10)

Sliding down along the slippery slope

Stem cell therapy remains a form of treatment

Commercialization, but not at any price

Not just facts, ideas are also needed

The apparent academy

The brain develops in interaction with culture

How to listen to (the right) patient voices? (By Ulrik Kihlbom)

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