A blog from the Centre for Research Ethics & Bioethics (CRB)

Tag: bioethics (Page 6 of 10)

Research is not a magical practice

Pär SegerdahlWhy does hearing about research sometimes scare us in a vertiginous way? I mean the feeling that researchers sometimes dig too deeply, that they see through what should not be seen through, that they manipulate the fundamental conditions of life.

It does not have to concern GMOs or embryonic stem cell research. During a period, I wrote about studies of human conversation. When I told people that I was working on conversation analysis, I could get the reaction: “Oh no, now I dare not talk to you, because you’ll probably see through everything I say and judge how well I’m actually talking.”

Why do we react in such a way? As if researchers saw through the surface of life, as through a thin veil, and gained power over life by mastering its hidden mechanisms.

My impression is that we, in these reactions, interpret research as a form of magic. Magic is a cross-border activity. The magician is in contact with “the other side”: with the powers that control life. By communicating with these hidden powers, the magician can achieve power over life. That is at least often the attitude in magical practices.

Is this how we view research when it scares us in a dizzying way? We think in terms of a boundary between life and its hidden conditions; a boundary that researchers transgress to gain power over life. Research then appears transgressive in a vertiginous way. We interpret it as a magical practice, as a digging into the most basic conditions of life.

The farmer who wants to control the water level in the field by digging ditches, however, is not a magician who communicates with hidden forces. Digging ditches gives you ordinary power in life: it gives control of the water level. I would like to say that research is more like digging ditches to control the water level than like engaging in magic to control life itself. Certainly, research gives power and control – but in life, not over “life itself.”

This does not mean that research does not need to be regulated; digging ditches probably needs regulation too.

The magical aura of charismatic researchers sometimes seduces us. We think they are close to the solution of “the riddle” and give them a free hand… We must be careful not to give research work a magical interpretation.

Pär Segerdahl

This post in Swedish

We like real-life ethics : www.ethicsblog.crb.uu.se

Where to publish and not to publish in bioethics – the 2017 list

Stefan Eriksson, Associate Professor of Research Ethics, Uppsala University

This blog has been updated! Click to see the new 2018 list!

Allegedly, there are over 8.000 so called predatory journals out there. Instead of supporting readers and science, these journals serve their own economic interests first and at best offer dubious merits for scholars. We believe that scholars working in any academic discipline have a professional interest and a responsibility to keep track of these journals. It is our job to warn the young or inexperienced of journals where a publication or editorship could be detrimental to their career and science is not served. We have seen “predatory” publishing take off in a big way and noticed how colleagues start to turn up in the pages of some of these journals. While many have assumed that this phenomenon mainly is a problem for low status universities, there are strong indications that predatory publishing is a part of a major trend towards the industrialization of misconduct and that it affects many top-flight research institutions (see Priyanka Pulla: “In India, elite institutes in shady journals”, Science 354(6319): 1511-1512). This trend, referred to by some as the dark side of publishing, needs to be reversed.

Gert Helgesson, Professor of Medical Ethics, Karolinska InstitutetThus we published this blog post in 2016. This is our first annual update (the previous version can be found here). At first, we relied heavily on the work of Jeffrey Beall, a librarian at the University of Colorado, who runs blacklists of “potential, possible, or probable” predatory publishers and journals. His lists have since been removed although they live on in new form (anonymous) at the Stop predatory journals site (SPJ) and they can also be found archived. These lists were not, however, the final say on the matter, as it is impossible for one person to judge reliably actors in every academic discipline. Moreover, since only questionable journals are listed, the good journals must be found elsewhere.

A response of gatekeeping needs to be anchored in each discipline and the scholars who make up that discipline. As a suitable response in bioethics, we have chosen to, first, collect a few authoritative lists of recommended bioethics journals that can be consulted by anyone in bioethics to find good journals to publish with. Last year, we recommended a list of journals ourselves, which brought on some well-deserved questions and criticism about criteria for inclusion. Unfortunately then, our list ultimately drew attention from other parts of the message that we were more concerned to get across. Besides, there are many other parties making such lists. We therefore have dropped this feature. Instead we have enlarged the collection of good journal lists to the service of our readers. They are all of great use when further exploring the reputable journals available:

It is of prime importance to list the journals that are potentially or possibly predatory or of such a low quality that it might be dishonoring to engage with them. We have listed all 36 of them (up with eleven from last year) alphabetically and provided both the homepage URL and links to any professional discussion of these journals that we have found (which most often alerted us to their existence in the first place).

Each of these journals asks scholars for manuscripts from, or claims to publish papers in bioethics or related areas (such as practical philosophy). They have been reviewed by the authors of this blog post as well as by a group of reference scholars that we have asked for advice on the list. Those journals listed have unanimously been agreed are journals that – in light of the criticism put forth and the quality we see – we would not deem acceptable for us to publish in. Typical signs as to why a journal could fall in this category, such as extensive spamming, publishing in almost any subject, or fake data being included on the website etc., are listed here:

We have started to more systematically evaluate the journals against the 25 defining characteristics we outlined in the article linked to above (with the help of science and technology PhD students). The results will be added when they exist.

We would love to hear about your views on this blog post, and be especially grateful for pointers to journals engaging in sloppy or bad publishing practices. The list is not meant as a check-list but as a starting point for any bioethics scholar to ponder for him- or herself where to publish.

Also, anyone thinking that a journal in our list should be given due reconsideration might post their reasons for this as a comment to the blog post or send an email to us. Journals might start out with some sloppy practices but shape up over time and we will be happy to hear about it. You can make an appeal against the inclusion of a journal and we will deal with it promptly and publicly.

Please spread the content of this blog as much as you can and check back for updates (we will do a major update annually and continually add any further information found).

WHERE NOT TO PUBLISH IN BIOETHICS – THE 2017 LIST

UPDATE! New journal added: Advance Humanities and Social Sciences (Consortium Publisher). Behind this journal you’ll find OMICS, the most-ever discussed publisher of this kind, see http://ottawacitizen.com/news/local-news/predatory-publisher-expanding-empire-in-canada. The only article published in 2016 is very badly edited, all the references are lost in the text and the paper would not pass an exam at our departments. The publisher is listed on SPJ.

UPDATE II: New journal added: The Recent Advances in Academic Science Journal (Swedish Scientific Publications). Despite the name it seems based in India. The only Swedish editor’s existence cannot be verified. Website quality is lacking. Listed on SPJ. A thorough review October 2017 concludes that it exhibits at least 15 of the 25 criteria for “predatory” journals.

UPDATE III: New journal added: Journal of Bioethics and Applications (Sci Forschen). Brand new journal with no articles yet. Publisher has been criticized for spamming more than once, have a bad record at Scam Analyze, and is listed on SPJ.

UPDATE IV: New journal added: Jacobs Journal of Clinical Trials. Spamming with invitation to special issue on ‘Ethical Issues in Health Care Research’. Have been severely criticized here and also in this scholarly article. Publisher listed on SPJ. A randomly chosen article from issue 1 is markedly flawed in execution.

UPDATE V: New journal added: JSM Health Education and Primary Health Care.  Spamming with invitation to special issue on ‘Bioethics’. The publisher is listed on SPJ,  and criticized and exposed here. It is indexed by spoof indexer Directory of Research Journals Indexing among others (whose website is now gone, BTW).

In light of recent legal action taken against people trying to warn others about dubious publishers and journals – see here and here – we want to stress that this blog post is about where we would like our articles to show up, it is about quality, and as such it is an expression of a professional judgement intended to help authors find good journals with which to publish. Indirectly, this may also help readers to be more discerning about the articles they read. As such it is no different from other rankings that can be found for various products and services everywhere. Our list of where not to publish implies no accusation of deception or fraud but claims to identify journals that experienced bioethicists would usually not find to be of high quality. Those criticisms linked to might be more upfront or confrontational; us linking to them does not imply an endorsement of any objectionable statement made therein. We would also like to point out that individual papers published in these journals might of course nevertheless be perfectly acceptable contributions to the scholarly literature of bioethics.

Stefan Eriksson & Gert Helgesson

Read more about Stefan’s work at CRB here

Essential resources on so-called predatory publishing and open access:

We like ethics : www.ethicsblog.crb.uu.se

Fear of the unknown produces ghosts

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

This post in Swedish

We like real-life ethics : www.ethicsblog.crb.uu.se

Sliding down along the slippery slope

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.

This post in Swedish

Approaching future issues - the Ethics Blog

More biobank ethics and law

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?

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.

This post in Swedish

Approaching future issues - the Ethics Blog

Stem cell therapy remains a form of treatment

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

This post in Swedish

The temptation of rhetoric - the ethics blog

Ethics and law of stem cell treatment of diabetes

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

This post in Swedish

Approaching future issues - the Ethics Blog

Two researchers in neuroethics

Our neuroethics group at CRB currently seek two postdoctoral researchers to work in the Human Brain Project (European Commission Future and Emerging Technologies Flagship Project). The positions have different focus.

One research task focuses on the role of contexts and cultural imprinting in understanding the brain’s functional architectures. Read more and apply.

The second research task focuses on philosophical and ethical challenges of modelling cognitive processes in silica. Read more and apply.

Employments are temporary, renewable halftime positions, starting February 1, 2017 (or as otherwise agreed). If you have questions, please contact Kathinka Evers.

Application deadline is January 12, 2017.

Pär Segerdahl

We transgress disciplinary borders - the Ethics Blog

Did medicine save the life of ethics?

Pär SegerdahlAbout thirty-five years ago, Stephen Toulmin wrote an article on the topic: How medicine saved the life of ethics. I think it is still worth reading.

Toulmin argued roughly as follows:

During the first six decades of the 1900s, ethics wasn’t feeling well at all. One might say that it suffered from moral aphasia: it couldn’t talk sensibly about real ethical problems.

While moral philosophers were preoccupied with formally specifying what distinguishes moral questions and judgements in general, without taking sides on specific ethical issues, ethics debaters outside of academic philosophy were trapped in the opposition between dogmatism and relativism.

Dogmatists referred respectfully to universal principles and authoritative religious systems, while relativists and subjectivists dismissed the absolute claims with reference to anthropological and psychological findings about differences in people’s attitudes.

In short, while philosophers analyzed what characterizes morality in general and left living ethical issues to their fate, dogmatists and relativists fought fruitlessly about whether these issues have absolute answers, based on universal principles, or if the answers are relative to cultural and individual factors.

In this near-death state, medicine came to the rescue. Medical practices gave rise to very definite ethical questions that insisted on answers and guidance. When philosophers in the 1960s began to pay attention to these issues, ethics was rescued from the life-threatening condition in which it found itself.

Toulmin suggests that medical ethics saved the life of ethics through four resuscitation efforts:

By focusing on situations, needs and interests, which are more objectively given than the attitudes, feelings and desires that anthropology and psychology were interested in. Whether a person’s actions threaten another’s health can be discussed in objective terms, as opposed to questions about habits and tastes.

(Here I think of the emergence of empirical ethics, where more objective aspects of ethical problems are explored in various kinds of studies.)

By analyzing concrete cases, instead of striving towards the universal principles to which dogmatists referred. Toulmin compares medical ethics to medical practice. Diseases described only in general terms become abstract and without specific relevance: they acquire practical relevance only for health professionals who learned the art of identifying real-life cases of the diseases. The same applies to ethics, which requires an art of identifying real-life cases of, for example, “disrespect”; otherwise ethical concepts become abstract and without practical significance.

(Here I think, among other things, of the emergence of ethics rounds in the ethics training of healthcare staff.)

By focusing on professional activities, giving rise to definite responsibilities and duties. To understand our duties to each other, we cannot assume an abstract image of humans as individuals. We live in communities and act in forms of life that shape our obligations. Issues in medical ethics are often about obligations shaped by professional roles and contexts.

(Here I think of the previous blog post, about boundaries between public health and healthcare, which sometimes might be transgressed. Practices such as research, healthcare and industry shape different types of obligation and responsibility, which it sometimes can be difficult to keep separate or balance.)

By reintroducing assessments of equity and personal relationships in ethics, assessments of how the circumstances alter the cases. What, in a doctor-patient relationship, is a routine examination, can outside of this context give us reason to speak of an assault. Circumstances alter the cases, and Toulmin compares medical ethics with how courts make assessments of what is just and reasonable between people, given what we know about them.

(Here I think of how medical ethics increasingly is done in dialogue with patients, health professionals and researchers, to better understand the circumstances.)

– Why do I find Toulmin’s article worth reading today?

Among other things, because it provides a broad and realistic description of ethics as a practice and art, in time and in particular contexts, partly comparable to the doctor’s or the lawyer’s practice and art. The article also makes the development of bioethics understandable, such as the emergence of empirical ethics, of ethics rounds, and of the endeavor to work in dialogue with stakeholders and with the professions.

The article also nuances a simplified understanding of how ethical questions are answered. We are inclined to think that empirical studies give us the facts. Then we add general moral principles and derive the ethical conclusions. This could resemble a relapse into dogmatism, where religious principles have been replaced by secular philosophical principles.

Finally, I want to mention that the article sheds light on a problem that we encountered in some empirical studies lately. Colleagues have made ethical education interventions in different healthcare professions. The participants appreciated the practical exercises and found them instructive. But no clear effect of the exercises could be measured by comparing results of knowledge tests before and after the interventions.

Toulmin’s description of how medicine saved the life of ethics may suggest an explanation. The exercises were practical and concerned cases with which the participants were familiar. But the knowledge tests were formulated roughly in those general terms which constituted such a large part of the illness of ethics. The interventions might have been vitalizing, but not the method of measurement.

Pär Segerdahl

This post in Swedish

We think about bioethics : www.ethicsblog.crb.uu.se

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