Where to publish and not to publish in bioethics – the 2019 list

June 3, 2019

Stefan Eriksson, Associate Professor of Research Ethics, Uppsala University

Allegedly, there are over 12.000 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 third  annual update (the first version can be found here). At first, we relied heavily on the work of Jeffrey Beall, a librarian at the University of Colorado, who run 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. The latest effort to create a thorough blacklist comes from Cabells, who distinguish around 70 different unacceptable violations and employs a whole team reviewing journals. These lists are not, however, the final say on the matter, as it is impossible for one person or a limited group 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 gate keeping 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. For our first post, 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 50 of them alphabetically (eleven new entries for 2019, two have ceased operation and been removed), 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 2019 LIST

  • Advance Humanities and Social Sciences (Consortium Publisher)
    Critical remark (2018): 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.  2017 volume is again only one article. The publisher is listed on SPJ.
  • Advances In Medical Ethics  (Longdom Publishing)
    Critical remark (2019): When asked, one editor attest to the fact that his editorship was forged. Publisher was on Beall’s list.
  • American Open Ethics Journal (Research and Knowledge Publication)
    Critical remark (2019): Listed on Cabells with 7 violations.
  • Annals of Bioethics & Clinical Applications (Medwin Publishers)
    Criticism 1 │ Criticism 2
    Critical remark: Publisher was on Beall’s list and is on many other lists of these journals. They say that they are “accepting all type of original works that is related to the disciplines of the journal” and indeed the flow chart of manuscript handling does not have a reject route. Indexed by alternative indexes.
  • Austin Journal of Genetics and Genomic Research (Austin Publishing Group)
    Criticism 1 │Criticism 2 │Criticism 3
    Critical remark (2017): Spam e-mail about special issue on bioethics; Listed by SPJ; Romanian editorial member is said to be from a university in “Europe”; Another editorial board member is just called “Michael”; APG has been sued by International Association for Dental Research and The American Association of Neurological Surgeons for infringing on their IP rights. Student review concludes the journal is not suitable to publish in.
    Critical remark (2019): Listed by Cabells with 10 violations.
  • British Open Journal of Ethics (British Open Research Publications)
    Critical remark (2019): Listed by Cabells with 6 violations.
  • Creative Education (Scientific Research Publishing – SCIRP)
    Criticism 1 │ Criticism 2
    Critical remark (2017): Listed by SPJ; They claim misleadingly to be indexed by ISI but this relates to be among cited articles only – they are not indexed. A thorough review May 2017 concludes that it exhibits at least 5 of the 25 criteria for “predatory” journals.
  • East European Scientific Journal (East European Research Alliance)
    Critical remark (2017): Listed by SPJ; Criticised by Beall for having a bogus editorial board; Claims to be indexed by ISI but that is not the well-known Institute for Scientific Information (now Thompson Reuters), but rather the so-called International Scientific Indexing. Thorough reviews November 2018 and February 2019  conclude that it exhibits at least 13 or 14 of the 25 criteria for “predatory” journals.
  • Ethics Today Journal (Franklin Publishing)
    Critical remark (2019): Listed by Cabells with 9 violations.
  • European Academic Research (Kogaion Publishing Center, formerly Bridge Center)
    Critical remark (2017): Listed by SPJ; Uses impact factor from Universal Impact Factor (now defunct); A thorough review May 2017 concludes that it exhibits at least 15 of the 25 criteria for “predatory” journals.
  • European Scientific Journal (European Scientific Institute)
    Critical remark (2017): Listed by SPJ; Use of alternative indexes. A thorough review May 2017 concludes that it exhibits at least 9 of the 25 criteria for “predatory” journals.
  • International Journal of Advances in Social Science and Humanities
    Critical remark (2017): Listed by SPJ; Impact factor given by  Global Impact Factor. A thorough review March 2019 concludes that it exhibits at least 10 of the 25 criteria for “predatory” journals.
  • International Journal of Contemporary Research & Review
    Critical remark (2017): Listed by SPJ; Indexed by Index Copernicus; Despite claims they seem not to be indexed by either Chemical Abstracts or DOAJ. A thorough review June 2017 concludes that it exhibits at least 9 of the 25 criteria for “predatory” journals.
  • International Journal of Current Research
    Criticism
    Critical remark (2017): Listed by SPJ; Uses IF from SJIF and Index Copernicus and more. It wrongly claims to be indexed by Thomson Reuters, ORCID and having a DOI among other things. A thorough review January 2018 concludes that it exhibits at least 12 of the 25 criteria for “predatory” journals.
  • International Journal of Current Research and Academic Review (Excellent Publishers)
    Critical remark (June 2018): Listed by SPJ and Cabells because of misleading claims about credentials, metrics, and too quick review; alternative indexing; publishes in almost any field imaginable; the editor -in-chief is head of the “Excellent Education and Researh Institute” (sic) which does not seem to exist even when spelled right?
  • International Journal of Ethics & Moral Philosophy (Journal Network)
    Critical remark (2017): Listed by SPJ; Publisher was criticized by Beall when launching 350 journals at once; After several years not one associate editor has signed up and no article has been published; No editorial or contact details available. A thorough review in May 2019 concludes that it exhibits at least 12 of the 25 criteria for “predatory journals”.
  • International Journal of Ethics in Engineering & Management Education
    Critical remark (2019): Papers from almost any field; Claims to have a 5.4 Impact factor (from IJEEE); Indexed by GJIF etc. A non-existent address in “Varginia”, US (sic!); Open access but asks for the copyright; Claims to be indexed in Scopus can’t be verified. A thorough review February 2018 concludes that it exhibits at least 16 of the 25 criteria for “predatory” journals. Listed by Cabells with 11 violations found.
  • International Journal of Humanities and Social Science (Centre for Promoting Ideas)
    Criticism 1Criticism 2Criticism 3 │ Criticism 4
    Critical remark (2019): The chief editor listed in April 2014  is a deceased person (2018). A thorough review in April 2019 concludes that it exhibits at least 9 of the 25 criteria for “predatory” journals.
  • International Journal of Humanities and Social Science Invention
    Criticism 
    Critical remark (2017): Listed by SPJ and is on many other lists of blacklisted journals; An IF of 4.5 given by African Quality Centre for Journals; Open access but asks for the copyright; Publishes any subject; Says that the journal is indexed in DOAJ which it does not seem to be. A thorough review February 2018 concludes that it exhibits at least 13 of the 25 criteria for “predatory” journals.
  • International Journal of Humanities and Social Science Research
    Critical remark (2017): Listed by SPJ; Claims an IF of 5.22 (by “Research Journal Impact Factor“); Despite title from India; Alternative indexing; A thorough review February 2018 concludes that it exhibits at least 13 of the 25 criteria for “predatory” journals.
  • International Journal of Humanities and Social Sciences
    Critical remark (2017): Listed by SPJ; Has an amazing fast-track review option for $100 that guarantees “the review, editorial decision, author notification and publication” to take place “within 2 weeks”. “Editors” claim that repeated requests to be removed from the list of editors result in nothing. Thorough reviews in  February and June 2018 conclude that it seems to exhibit at least 7 to 10 of the 25 criteria for “predatory” journals.
  • International Journal of Humanities & Social Studies
    Critical remark (2017): Listed by SPJ; IF from International Impact Factor Services; States that there “is no scope of correction after the paper publication”.
    Critical remark (2018): They write that the “review process will be completed expectedly within 3-4 days”.
  • International Journal of Philosophy (SciencePG)
    Criticism 1 │ Criticism 2
    Critical remark (2017): Listed by SPJ; Alternative indexing and also IF from Universal Impact Factor (now defunct); Promises a two-week peer review. Thorough reviews in April and November 2018 conclude that it seems to exhibit at least 10 or 8 of the 25 criteria for “predatory” journals and also find obvious examples of pseudo-science among the published articles.
  • International Journal of Philosophy and Theology (American Research Institute for Policy Development)
    Criticism 1 Criticism 2 │ Criticism 3
    Critical remark: A thorough review in June 2018 concludes that “there are grounds to believe that the American Research Institute never intended to create a serious scientific periodical and that, on the contrary, its publications are out-and-out predatory journals.”
  • International Journal of Public Health and Human Rights (Bioinfo Publications)
    Criticism
    Critical remark (2017): Listed on SPJ; On many other blacklists and IF from Index Copernicus.
  • International Journal of Research in Humanities and Social Studies (Sryahwa Publications)
    Critical remark (2017): Listed on SPJ; Open access but asks for the copyright. A thorough review in April 2018 concludes that it seems to exhibit at least 9 of the 25 criteria for “predatory” journals.
  • International Journal of Social Science and Humanities Research (Research Publish Journals)
    Critical remark (2017): Listed on SPJ; On their homepage they state that in order to get a high IF their journals are “indexed in top class organisation around the world” although no major index is used.
  • International Open Journal of Philosophy (Academic and Scientific Publishing)
    Critical remark (2017): Listed on SPJ and was heavily critized on Beall’s blog; The editorial board consists of one person from Iran; Although boosting 12 issues a year they have published only 1 article in the journal’s first four years; A thorough review March 1 2017 concludes that it exhibits 17 of the 25 criteria for “predatory” journals and one in March 2019 that it exhibits at least 13 criteria.
  • International Researchers
    Critical remark (2017): Listed on SPJ; Indexed by e.g. Index Copernicus; Claims that it is “Monitor by Thomson Reuters” but is not part of the TR journal citation reports; Several pages are not working at time of review; A thorough review April 24 2017 concludes that it exhibits at least 6 of the 25 criteria for “predatory” journals.
  • Internet Journal of Law, Healthcare and Ethics (ISPUB)
    Criticism 1 │ Criticism 2
    Critical remark (2017): Formerly on Beall’s list.
  • Jacobs Journal of Clinical Trials
    Critical remark (2018): 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.
    Critical remark (2019): Web page is presently down when trying to access.
  • Journal of Academic and Business Ethics (Academic and Business Research Institute)
    Critical remark (2017): Listed on SPJ as well as several other blacklists; Journal seems uncertain about it’s own name, the header curiously says “Journal of ethical and legal issues”.
  • Journal of Bioethics and Applications (Sci Forschen)
    Critical remark (2018): 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.
  • Journal of Clinical Research & Bioethics (OMICS)
    Criticism 1Criticism 2 │ Criticism 3 │ Criticism 4 │ Criticism 5 │ Criticism 6
    Critical remark (2017): This publisher is listed on SPJ and was taken to court for possible fraud by the Federal Trade Commission in the US (and lost). They are listed by Cabells for 8 violations.
  • Journal of International Ethical Theory and Practice (MedCrave)
    Criticism 1 │ Criticism 2 │ Criticism 3 │ Criticism 4 │ Criticism 5 │ Criticism 6 │ Criticism 7
    Critical remark (May 2018): New journal with no articles or issues yet – but still is in need of so many editors that spam emails are sent. They kindly allow for scientific articles: “The research articles can include the findings and the methodology you used.” MedCrave uses many alternative indexing services. They are listed by SPJ. They also spam the Internet with claims for all criticism to be a hoax or fake news.
    Update 2019: Have ceased operations, apparently.
  • Journal of Law and Ethics
    Critical remark (2017): Listed on SPJ; Claims to be on Ulrichs but is not; Claims to be in the Norwegian list and can actually be found there but under its former name (4 years earlier) and with 0 points.
    Update 2019: Seems to have moved to here. Security warnings and denied access makes it impossible to check whether it is the same journal or another one.
  • Journal of Philosophy and Ethics (Sryahwa Publications)
    Critical remark (2019): listed by Cabells for 7 violations.
  • Journal of Research in Philosophy and History (Scholink)
    Criticism 1 │
    Critical remark (June 2018): Listed on several lists of predatory publishers. They only do “peer review” through their own editorial board, a flowchart states. They claim to check for plagiarism but the first 2018 article abstract run by us through a checker turned out to be self-plagiarized from a book and it looks to have been published many times over. Unfortunately, the next paper checked in the same issue was also published the previous year by another journal listed here…
  • Journal of Social Sciences and Humanities (AASCIT)
    Criticism 1Criticism 2Criticism 3
    Critical remark (2019): From law to religion, this journal publishes it all. Though publisher claims to be “American”, it has only two editors, both from India. The list from Cabells includes 13 journals from this publisher. The AASCIT Code of Ethics apparently plagiarizes the INCOSE Code of Ethics.
  • Journal of Studies in Social Sciences and Humanities
    Critical remark (2017): Listed on SPJ; Alternative indexing; Uses several alternative IF providers. A thorough review October 2017 concludes that it exhibits at least 9 of the 25 criteria for “predatory” journals.
  • 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).
    Update 2019: Access denied because of non-secure connection.
  • Medical Ethics and Communication (Avid Science)
    Criticism
    Critical remarks (2017): Listed on SPJ; Spamming researchers with offer of eBook publication for $350.
  • Nova Journal of Humanities and Social Sciences
    Criticism
    Critical remark (2018): This publisher was on Beall’s list; Uses alternative impact factors and indexing; Publishes in less than 30 days; Curiously, it says no fee is charged for publication.
    Update 2019: Web pass alert on entering the site.
  • Open Journal of Philosophy (Scientific Research Publishing – SCIRP)
    Criticism 1 │ Criticism 2 │ Criticism 3 │
  • Philosophical Papers and Review (Academic Journals)
    Critical remark (2017): Listed on SPJ and blacklisted by the Ministry of Higher Education of Malaysia; Although it claims to be a peer-review journal, it states that manuscripts “are reviewed by editorial board members or other qualified persons”.
  • Philosophy Study  (David Publishing Company)
    Criticism 1Criticism 2
    Critical remark (2017): Listed on SPJ.
  • The Recent Advances in Academic Science Journal (Swedish Scientific Publications)
    Critical remark (2018): Despite the publisher’s 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.
  • Universal Open Ethics Journal (Adyan Academic Press)
    Critical remark (2019): listed by Cabells for 7 violations.
  • World Journal of Social Sciences and Humanities (Science and Education Publishing, SciEP)
    Criticism 1 │Criticism 2
    Critical remark (2017): Listed on SPJ as well as many other blacklists. A thorough review may 2019 concludes that it exhibits at least 7 of the 25 criteria for “predatory” journals.

Update 1: International Journal of Legal, Ethical and Regulatory Issues (Jacobs Publishers)
Criticism 1Criticism 2
Critical remark (2019): Spamming with invitation to publish. They are unsure of their own name; in the e-mail they call the journal “International Journal of Legal, Ethical and Regulatory Affairs“! Publisher listed on SPJ. Editor-in-chief and editorial board are missing. Claims that material is “written by leading scholars” which is obviously false.

End remark:

In light of recent legal action taken against people trying to warn others about dubious publishers and journals – see here and here, for example – 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


How about personally optimized treatment?

May 6, 2019

Pär SegerdahlIt is well known that patients who are asked to participate in cancer trials are tempted by the therapeutic misconception. They believe they are offered a newer and better treatment, when in fact it is about research into an untested treatment. When researchers use genetic tests to develop personalized oncology, even more misconceptions can arise. I will soon explain. But first, what is personalized cancer treatment? Here is an example.

Patients whose tumor is to be operated may undergo preparatory radiation or chemotherapy. Since the preparatory therapy has severe side effects, one wants to avoid giving it to patients whose tumors do not respond to it. The challenge is to distinguish patients who respond to treatment from patients who do not. This is to be accomplished through, among other things, genetic tests on the tumor cells. If this works, you can develop personalized cancer treatment. Patients with the “right” tumor cell genetics receive the preparatory therapy, while patients who, according to the genetic tests, only get the side effects, with no effect on tumor growth, do not receive the therapy.

What are the misconceptions that can arise in patients who are asked to participate in research on personalized cancer treatment? Here are some examples.

Patients who are told that the researchers will do genetic tests can feel a genetic responsibility to participate, considering their children and grandchildren. They believe the test results may be relevant to close relatives, who may have the same disease genes. However, the tests are done on mutated tumor cells and therefore say nothing about inherited cancer risk. A sense of genetic responsibility can thus be triggered by the word “genetics” and create a genetic misconception of research in personalized oncology.

Other misconceptions have to do with the positive language used to describe personalized medicine. One talks about personally “optimized” treatments, about “tailored” treatments, about treatments that are adapted “to the individual.” This language use is not intended to mislead, but it is easy to see how words such as “optimization” can cause patients to believe that research participation means special treatment benefit.

The biggest challenge is perhaps to explain the research purpose behind the positive language. The aim is to be able in the future to distinguish between patients, to “stratify” them, as it less positively is called. Personally optimized care actually means that some patients do not receive certain treatments. This is, of course, reasonable if genetic tests can show that they have no benefit from the treatments but only get the side effects. However, what do cancer patients themselves say about stratified cancer treatment, where some patients are identified as non-responders and therefore are not offered the same treatment as other patients? Finally, do participants understand that “tailored treatment” is a future goal of the study and not something they are offered to try?

Communication with patients recruited for studies in personalized oncology faces many challenges, as patients are tempted by even more misconceptions than just the well-known therapeutic misconception.

Do you want to know more? Read the German study that inspired this blog post.

Pär Segerdahl

Perry, J., Wöhlke, S., Heßling, A.C., Schicktanz, S. 2017. Why take part in personalised cancer research? Patients’ genetic misconception, genetic responsibility and incomprehension of stratification—an empirical‐ethical examination. Eur J Cancer Care. https://doi.org/10.1111/ecc.12563

This post in Swedish

We care about communication - the Ethics Blog


Pragmatic trials without informed consent?

April 8, 2019

Pär SegerdahlRandomized controlled trials (RCTs) are considered to be the gold standard for determining a causal effect of medical interventions. To achieve this aim, possible confounding factors must be avoided. This implies excluding many patients from participating in the trial, for example, patients with concomitant conditions. A negative consequence of these exclusions, however, is limited generalizability. Studying the artificially uniform participant group, you will be able to determine a causal effect, but you will know much less about real-life treatment outcomes in the population where the intervention actually will be used.

Further artificiality is created by the written informed consent procedure, which excludes even further patients from participating in the trial. Moreover, because they know they participate in a clinical trial, participants may change their behavior.

All this points to the importance of so-called pragmatic randomized controlled trials. In such trials, the effectiveness of two approved and routinely prescribed medicines are compared in normal clinical practice. This avoids most of the artificiality of RCTs and significantly improves generalizability and practical clinical relevance. Randomization is still required for scientific purposes, however, and written informed consent is an ethical obligation.

The demand for written informed consent is an obstacle to pragmatic trials. By creating, once again, artificial selection of patients, results continue to be less generalizable, which detracts from the whole point of conducting pragmatic trials. In a recent paper in the BMJ, twelve authors, among them, Stefan Eriksson at CRB, therefore argue that “EU clinical trial regulations should be revised to allow the waiver or modification of informed consent in low risk pragmatic trials.”

Some would consider this suggestion to be controversial. We need to keep in mind, however, the extremely low risks of studies that compare standardly prescribed medicines in normal clinical practice. We need to balance that low risk against the enormous social value of generalizable findings in evidence-based medicine.

Pär Segerdahl

Dal-Ré, R. et al. Low risk pragmatic trials do not always require participants’ informed consent. BMJ 2019;364:l1092

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


Patients find misleading information on the internet

October 30, 2018

Pär SegerdahlIn phase 1 clinical studies of substances that might possibly be used to treat cancer in the future, cancer patients are recruited as research participants. These patients almost always have advanced cancer that no longer responds to the standard treatment.

That research participation would affect the cancer is unlikely. The purpose of a phase 1 study is to determine safe dosage range and to investigate side effects and other safety issues. This will then enable proceeding to investigating the effectiveness of the substance on specific forms of cancer, but with other research participants.

Given that patients often seek online information on clinical trials, Tove Godskesen, Josepine Fernow and Stefan Eriksson wanted to investigate the quality of the information that currently is available on the internet about phase 1 clinical cancer trials in Sweden, Denmark and Norway.

The results they report in the European Journal of Cancer Care are quite alarming. The most serious problem, as I understand it, is that the information conceals risks of serious side effects, and in various ways suggests possible positive treatment outcomes. This lack of accurate language is serious. We are dealing with severely ill patients who easily entertain unrealistic hopes for new treatment options.

To give a picture of the problem, I would like to give a few examples of typical phrases that Godskesen, Fernow and Eriksson found in the information on the internet, as well as their suggestions for more adequate wordings. Noticing the contrast between the linguistic usages is instructive.

One problem is that the information speaks of treatment, even though it is about research participation. Instead of writing “If you are interested in the treatment,” you could write “If you want to participate in the research.” Rather than writing “Patients will be treated with X,” you could write “Participants will be given X.”

The substance being tested is sometimes described as a medicine or therapy. Instead, you can write “You will get a substance called X.”

Another problem is that research participation is described as an advantage and opportunity for the cancer patient. Instead of writing “An advantage of study participation is that…,” one could write “The study might lead to better cancer treatments for future patients.” Rather than writing “This treatment could be an opportunity for you,” which is extremely misleading in phase 1 clinical cancer trials, one could more accurately say, “You can participate in this study.”

The authors also tested the readability of the texts they found on the internet. The Danish website skaccd.org had the best readability scores, followed by the Norwegian site helsenorge.no. The Swedish website cancercenter.se got the worst readability scores. The information was very brief and deemed to require a PhD to be understandable.

It is, of course, intelligible that it is hard to speak intelligibly about such difficult things as cancer trials. Not only do the patients recruited as study participants hope for effective treatment. The whole point of the research is effective cancer treatment. This is the ultimate perspective of the research; the horizon towards which the gaze is turned.

The fact, however, is that this horizon is far removed, far away in the future, and is about other cancer patients than those who participate in phase 1 trials. Therefore, it is important not to let this perspective characterize information to patients in whom hope would be unrealistic.

Do not talk about treatments and opportunities. Just say “You can participate in this study.”

Pär Segerdahl

Godskesen, TE, Fernow J, Eriksson S. Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway. Eur J Cancer Care. 2018;e12937. https://doi.org/10.1111/ecc.12937

This post in Swedish

We have a clinical perspective : www.ethicsblog.crb.uu.se


Genetic risk: Should researchers let people know?

September 24, 2018

Should researchers inform research participants if they happen to discover individual genetic risks of disease? Yes, many would say, if the information is helpful to the participants. However, the value of complex genetic risk information for individuals is uncertain. Jennifer Viberg Johansson suggests that this uncertainty needs to be acknowledged by both geneticists and ethicists.

One reason people want to participate in large genetic studies is the comprehensive health checks researchers often offer to collect data. In the future, people could also be offered information about genetic risks. According to Jennifer Viberg Johansson, there are some factors researchers should consider before offering these kinds of results.

Providing genetic risk information may not be as helpful to individuals as one may think. Knowing your genetic make-up is not the same as knowing your own probability for disease. In addition, the genetic risk information from research is not based on symptoms or personal concerns, as it would be in the healthcare system. It is thus less “personalised” and not connected to any symptoms.

Genetic risk information is complex and can be difficult to understand. To the research participants interviewed by Jennifer Viberg Johansson, risk information is something that offers them an explanation of who they are, where they are from, and where they may be heading. To them, learning about their genetic risk is an opportunity to plan their lives and take precautions to prevent disease.

Whether research participants want genetic risk information or not is more complex. Research participants themselves may change their answer depending on the way the question is asked. Risk research shows that we interpret probabilities differently, depending on the outcome and consequences. Jennifer Viberg Johansson’s work points in the same direction: probability is not an essential component of people’s decision-making when there are ways to prevent disease.

People have difficulties making sense of genetic risk when it is presented in the traditional numeric sense. It is hard to interpret what it means to have a 10 per cent or 50 per cent risk of disease. Instead, we interpret genetic risk as a binary concept: you either have risk, or you don’t. Based on her results, Jennifer Viberg Johansson suggests we keep this in mind for genetic counselling. We need to tailor counselling to people’s often binary perceptions of risk.

Communicating risk is difficult, and requires genetic counsellors to understand how different people understand the same figures in different ways.

Jennifer Viberg Johansson defended her dissertation September 21, 2018.

Anna Holm

Viberg Johansson J., (2018), INDIVIDUAL GENETIC RESEARCH RESULTS – Uncertainties, Conceptions, and Preferences, Uppsala: Acta Universitatis Upsaliensis

This post in Swedish

We like challenging questions - the ethics blog


What does the order of authors mean?

September 19, 2018

Pär SegerdahlHow should we interpret the sequence of author names in academic publications? Does it inform us about how much each author contributed to the publication?

After reading an article on the topic by Gert Helgesson and Stefan Eriksson, I realize that authorship order is a very disorderly matter. The first and last positions are often counted as the most important. But not always. To my surprise, not even a first position necessarily signifies first authorship. Sometimes, the asterisk after the author whose contact details are given is interpreted as a sign of first authorship. Sometimes the asterisk means that this author is subordinate and handles all practicalities associated with the publication.

Sometimes the second position is of particular importance. Sometimes not. Sometimes the next to last position has a particular interpretation. Sometimes another. Helgesson and Eriksson talk about group traditions and describe conventions in different scientific fields. Are there really no guidelines to follow? No, actually not. Author guidelines at most recommend authors to agree well in advance on the order of authors. However, since the guidelines do not specify what the order signifies, the meaning of the agreed upon authorship order is unclear!

Considering how meritorious authorship is in academic competition for positions and grants, this lack of order is surprising. Is the question too sensitive? Will an overly clear order lead to time-consuming quarrels between authors about who should stand first, last, second place, second to last, with asterisk, without asterisk, and so forth?

Helgesson and Eriksson discuss different proposals for clarifying authorship order. One proposal they encountered is that the first and last positions each render 40% of the total value of the paper. The remaining 20% ​​is shared equally by the authors in the intermediate positions. For five authors, authorship value would thus be divided: 40, 6.7, 6.7, 6.7 and 40%. This type of proposal is dismissed, because fixed values ​​would be fair only if work efforts actually happened to be distributed just that way (which is unlikely).

A more flexible system could be to provide actual percentages, on a case-by-case basis. But how are actual percentages determined? Different authors contribute qualitatively differently: by designing the study; by analyzing data; by drafting the paper. What kind of contribution has most weight?

Another suggestion is not to assign a relative value to the authors’ contributions. Instead, one specifies what each one contributed. Contributorship instead of authorship, where the contribution is described in absolute terms rather than relative. For example: “contributed to designing the study,” “contributed to data analysis,” “contributed to drafting the paper.” A problem with this proposal, Helgesson and Eriksson point out, is that it in fact says very little about absolute contributions. “Contributed to designing the study” can mean both substantial and lightweight contributions.

The article ends by taking a step back. For perhaps we took a step in the wrong direction when we required a more orderly authorship order? The problem about the meaning of the sequence of author names presupposes an individualistic and competitive outlook on science. Today, there are also other tendencies, which may be more worthwhile, such as striving to make science open and socially responsive. Perhaps we should avoid attaching too much importance to authorship order?

Should our focus be on collective contributions to science, with and for society, rather than on individual merit ​​in the competition for employment and funding?

Thus the article ends, with a question calling for more contemplation.

Pär Segerdahl

Helgesson, G. & Eriksson, S. Authorship order. Learned Publishing, 2018, doi: 10.1002/leap1191

This post in Swedish

We want to be just - the Ethics Blog


Nurses’ vulnerable position when care and research coincide

September 10, 2018

Pär SegerdahlA new article highlights ethical challenges that nurses face in their profession when more and more clinical trials are conducted on cancer patients.

Nursing alone is stressful. Studies have shown how heavy workload and being pressed for time can cause moral blindness and emotional immunization among nurses. In clinical trials, the situation is even more complicated, due to dual professional roles. The nurses have to accommodate both the values of care and the values of research. Caring for cancer patients coincides with recruiting patients as research participants and coordinating clinical trials on them according to detailed research protocols.

The article by Tove Godskesen et al. describes challenges faced by nurses burdened with this dual professional identity. The most difficult challenges concern cancer patients near the end of life, who no longer respond to the standard therapy. They often hope desperately that research participation will give them access to the next generation of cancer drugs, which may work more efficiently on them. This unrealistic hope creates difficulties for the nurses. They must recruit cancer patients to clinical trials, while the patients often are so terminally ill that they, from a perspective of caring, perhaps rather should be allowed to end their lives in peace and quiet.

An additional complication, next to the heavy workload in nursing and the dual identity as a nurse in the service of research, is that the number of clinical trials increases. There is a political ambition to accelerate the development, to support the Nordic pharmaceutical industry. This means that more and more nurses are engaged to coordinate trials: a task for which they rarely were trained, for which they hardly have time to prepare, and over which they lack power, given their position in the hierarchy of healthcare.

In view of the political ambition to increase the number of clinical trials, there should be a corresponding ambition to support the increasing number of nurses who will have to assume dual professional roles. Godskesen’s study indicates that there is a lack of systematic strategies to handle the situation. Nurses who coordinate trials on patients support each other, to the best of their abilities, over a quick cup of coffee.

Godskesen recommends more strategic training and better support for nurses working with clinical trials. For the nurses’ sake, and not least for the sake of patient safety.

Pär Segerdahl

Tove E. Godskesen, Suzanne Petri, Stefan Eriksson, Arja Halkoaho, Margrete Mangset, Merja Pirinen, Zandra Engelbak Nielsen. 2018. When Nursing Care and Clinical Trials Coincide: A Qualitative Study of the Views of Nordic Oncology and Hematology Nurses on Ethical Work Challenges. Journal of Empirical Research on Human Research Ethics. doi.org/10.1177/1556264618783555

This post in Swedish

We have a clinical perspective : www.ethicsblog.crb.uu.se


%d bloggers like this: