Promoting public health requires responsibility, compassion and humility

June 10, 2019

Jessica Nihlén FahlquistPublic health focuses on the prevention of disease and the promotion of health on a collective level, that is, the health of the population. This distinguishes public health from medical care and the doctor-patient relationship.

In a clinical setting, the doctor discusses treatments with the patient directly and risks and benefits are assessed in relation to that individual. In contrast, public health agencies need to base their analysis on a collectivist risk-weighing principle, weighing risks of the population against benefits of the population. One example could be taxation of cigarettes or information concerning ways to reduce obesity.

Although the generalizations involved and the collectivist focus is necessary in public health, and although the overall intentions are good, there is always a risk that individual interests, values and rights are threatened. One example is the way current national and international breastfeeding policy affects non-breastfeeding mothers and possibly gay and adoptive parents. The norm to breastfeed is very pervasive, and studies show that women who cannot breastfeed feel that they may harm the baby or that they are inadequate as parents. It is possible to think of a couple who want to share parenthood equally and for that reason choose to bottle-feed their baby due to their values. The collectivist focus is based on a utilitarian rationale where the consequences in terms of health-related benefits of the population are the primary goal of successful interventions. In such efforts, the most important value is efficacy.

In addition to the underlying utilitarian perspective on health, there is also a somewhat contrasting human rights perspective in public health: the idea that all humans have certain rights, and that the right to life and health are of utmost importance. Finally, health is also discussed in terms of local and global justice, especially since inequalities in terms of socio-economical and educational differences have been acknowledged during recent years.

One could conclude that all aspects of the ethics of public health are covered by these different approaches. However, I would argue that there is one dimension missing in these analyses, namely, virtue ethics, and more specifically the virtues of responsibility, compassion and humility.

As mentioned above, there is a risk that the interests, values and rights of particular individuals and minorities are neglected by ever so well-intended collectivist policies. The power involved in more and less coercive public health policies calls for a certain measure of responsibility. A balance should be struck between the aim to promote the collective good and the respect for the choices and values of individuals.

In addition, a certain measure of compassion is needed. Compassion could be seen as a disposition to think and act in an emotionally engaged way in order to understand and acknowledge the effects of policy on individuals. This is clear when reflecting on the effects of breastfeeding policy on individuals who cannot breastfeed their babies.

Finally, since public health policy is not only a matter of evidence and science, but also about values, a certain degree of humility should be exercised, acknowledging also the provisional character of scientific evidence. This is the case with measles vaccination. The safety and efficacy of the vaccine can, and has been, established by science. However, the question whether to introduce mandatory vaccination is a matter of values. It should be possible to acknowledge and respect the values and perspectives of individuals without compromising what scientific evidence suggests in terms of safety and efficacy.

The virtues of responsibility, compassion and humility could be understood in terms of values of public health professionals, and they should be encouraged by the agencies for which such professionals work.

Jessica Nihlén Fahlquist

This post in Swedish

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

 

1 Comment | In the research debate | Tagged: , , | Permalink
Posted by Jessica Nihlén Fahlquist

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 1 │ Criticism 2 │ Criticism 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 1 │ Criticism 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 1 │ Criticism 2 │ Criticism 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 1 │ Criticism 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 1 │ Criticism 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

2 Comments | In the research debate | Tagged: , , , | Permalink
Posted by Stefan

People want to be able to influence the risk

May 27, 2019

Pär SegerdahlWe need to do research to know what people think is important in genetic risk information. What they prefer to know. But how do we find out? One way is to ask people to answer questionnaires.

One problem with questionnaires is that they ask one thing at a time. Do you prefer a hotel room with a sea view when you are on vacation? You probably answer yes. But do you prefer the sea view even if the room is above the disco, or costs 500 EUR per night? If you only ask one thing at a time, then it is difficult to know how different factors interact, how important they are relative to each other.

One way to get past this limitation is to ask people to choose between two alternatives, where the alternatives have several different attributes.

  • Hotel room A: (1) View: sea (2) Price: 200 EUR per night (3) Distance to the center: 30 minutes walk (4) Sound level: high.
  • Hotel room B: (1) View: parking (2) Price: 100 EUR per night (3) Distance to the center: 40 minutes bus ride (4) Sound level: low.

Which room do you choose, A or B? The choice tasks are repeated while the attributes are varied systematically. In this way, one can learn more about what people prefer, than through a regular questionnaire. One can see how different attributes interact and which attributes are more important than others are. One can also calculate how much more important an attribute is over another.

The same kind of study can be done about genetic risk information instead of hotel rooms. Jennifer Viberg Johansson at CRB recently did such a study. Four attributes of the risk information were varied in the choice tasks:

  • (1) Type of disease (2) Probability of developing disease (3) Preventive opportunities (4) Effectiveness of the preventive measure.

Which of the attributes was most important to the people who participated in the study? How much more important was it?

It turned out that the most important attribute was the effectiveness of the preventive measure. If the information contained an effective preventive measure, the respondents clearly preferred that information. The effectiveness of the preventive measure was twice as important to know, compared to the probability of developing the disease.

Apparently, it is important for people to be able to influence the risk. One conclusion in the study is that when risk information says that there is an effective preventive measure, then risk communication can focus more on the preventive measure than on the probability of developing disease.

The method is called, “Discrete Choice Experiment.” If you want to look more closely at the method and get more results, read Jennifer Viberg Johansson’s article in Genetics in Medicine.

Pär Segerdahl

Viberg Johansson, J., Langenskiöld, S., Segerdahl, P., Hansson, M.G., Hösterey Ugander, U., Gummesson, A., Veldwijk, J. Research participants’ preferences for receiving genetic risk information: a discrete choice experiment. Genetics in Medicine, 2019

This post in Swedish

ethics needs empirical input - the ethics blog

1 Comment | In the research debate | Tagged: , , , , | Permalink
Posted by Pär Segerdahl

Neuroethical reflection in the Human Brain Project

May 15, 2019

Arleen SallesThe emergence of several national level brain initiatives and the priority given to neuroscientific research make it important to examine the values underpinning the research, and to address the ethical, social, legal, philosophical, and regulatory issues that it raises.

Neuroscientific insights allow us to understand more about the human brain: about its dynamic nature and about its disorders. These insights also provide the basis for potentially manipulating the brain through neurotechnology and pharmacotherapy. Research in neuroscience thus raises multiple concerns: From questions about the ethical significance of natural and engineered neural circuitry, to the issue of how a biological model or a neuroscientific account of brain disease might impact individuals, communities, and societies at large. From how to protect human brain data to how to determine and guard against possible misuses of neuroscientific findings.

Furthermore, the development and applications of neuro-technology to alleviate symptoms or even enhance the human brain raise further concerns, such as their potential impact on the personality, agency, and autonomy of some users. Indeed, some empirical findings appear to even challenge long held conceptions about who we are, the capacity to choose freely, consciousness, and moral responsibility.

Neuroethics is the field of study devoted to examining these critical issues. Unfortunately, it has sometimes been reduced to a subfield of applied ethics understood as a merely procedural approach. However, in our understanding, neuroethics is methodologically much richer. It is concerned not just with using ethical theory to address normative issues about right and wrong, but notably with providing needed conceptual clarification of the relevant neuroscientific and philosophical notions. Only by having conceptual clarity about the challenges presented will we be able to address and adequately manage them.

So understood, neuroethics plays a key role in the Human Brain Project (HBP). The HBP is a European Community Flagship Project of Information and Computing Technologies (ICT). It proposes that to achieve a fuller understanding of the brain, it is necessary to integrate the massive volumes of both already available data and new data coming from labs around the world. Expected outcomes include the creation and operation of an ICT infrastructure for neuroscience and brain related research in medicine and computing. The goal is to achieve a multilevel understanding of the brain (from genes to cognition), its diseases and the effects of drugs (allowing early diagnoses and personalised treatments), and to capture the brain’s computational capabilities.

The HBP is funded by the European Commission in the framework of the EU’s Horizon 2020 research-funding programme. The programme promotes responsible research and innovation (RRI). RRI is generally understood as an interactive process that engages social actors, researchers, and innovators who must be mutually responsive and work towards the ethical permissibility of the relevant research and its products. The goal is to ensure that scientific progress and innovation are responsible and sustainable: that they increase individual and societal flourishing and maximize the common good.

To develop, broaden, and enhance RRI within the project, the HBP established the Ethics and Society subproject. Ethics and Society  is structured around a number of RRI activities such as foresight analysis (to identify at an early stage ethical and social concerns), citizens’ engagement (to promote involvement with different points of view and to strengthen public dialogue), and ethics support (to carry out research in applied ethics and to develop principles and mechanisms that ensure that ethical issues raised by research subprojects are communicated and managed and that HBP researchers comply with ethical codes and legal norms).

Neuroethical reflection plays a key role in this integration of social, scientific, and ethical inquiry. Notably, in the HBP such reflection includes conceptual and philosophical analysis. Insofar as it does, neuroethics aims to offer more than assistance to neuroscientists and social scientists in identifying the social, political, and cultural components of the research. Via conceptual analysis, neuroethics attempts to open a productive space within the HBP for examining the relevant issues, carrying out self-critical analysis, and providing the necessary background to examine potential impacts and issues raised. Neuroethical reflection in the HBP does not exclusively focus on ethical applications and normative guidance. Rather, it takes as a starting point the view that the full range of issues raised by neuroscience cannot be adequately dealt with without also focusing on the construction of knowledge, the meaning of the relevant notions, and the legitimacy of the various interpretations of relevant scientific findings.

At present, the importance of neuroethics is not in question. It is a key concern of the International Brain Initiative, and the different international brain projects are trying to integrate neuroethics into their research in different ways. What continues to be unique to neuroethics in the HBP, however, is its commitment to the idea that making progress in addressing the host of ethical, social, legal, regulatory and philosophical issues raised by brain research to a great extent depends on a conceptual neuroethical approach. It enables constructive critical alertness and a thought-out methodology that can achieve both substantial scientific ground and conceptual clarity.

If you want to read more, see below a list of publications on which this post is based.

Arleen Salles

Delegates eaGNS. Neuroethics Questions to Guide Ethical Research in the International Brain Initiatives. Neuron. 2018.

Evers K, Salles A, Farisco M. Theoretical Framing for Neuroethics: The Need for a Conceptual Aproach. In: Racine E, Aspler, J., editor. Debates About Neuroethics: Springer; 2017.

Salles A, Evers K. Social Neuroscience and Neuroethics: A Fruitful Synergy. In: Ibanez A, Sedeno, L., Garcia, A., editor. Social Neuroscience and Social Science: The Missing Link: Springer; 2017. p. 531-46.

Farisco M, Salles A, Evers K. Neuroethics: A Conceptual Approach. Camb Q Healthc Ethics. 2018;27(4):717-27.

Salles A, Evers K, Farisco M. Neuroethics and Philosophy in Responsible Research and Innovation: The Case of the Human Brain Project. Neuroethics. 2018.

Salles A, Bjaalie JG, Evers K, Farisco M, Fothergill BT, Guerrero M, et al. The Human Brain Project: Responsible Brain Research for the Benefit of Society. Neuron. 2019;101(3):380-4.

1 Comment | In the research debate | Tagged: , , , , , , , , , | Permalink
Posted by arleensalles

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

Leave a Comment » | In the research debate | Tagged: , , , , , , , , , , | Permalink
Posted by Pär Segerdahl

Genetic risk information: lines and stage directions

April 23, 2019

Pär SegerdahlOutside of their practical contexts, simple messages quickly lose their meaning. Recall what it is like to find an old Post-it Note: “Don’t forget the disk!” – What disk? The risk is great that we invent a context. Incomprehensible messages awaken our imagination.

Similarly, messages about genetic risk need practical contexts that make the information meaningful and prevent nightmarish imaginations. The information needs to become part of a larger drama. Otherwise, we begin to fantasize: “Greatly increased risk of breast cancer.” – What do they mean, “greatly increased”? What do they mean, “breast cancer”? What do they mean, “risk”?

The difficulty of understanding and benefitting from genetic risk information is probably partly due to lack of context. The potential for generating risk information is growing rapidly. All this information is waiting for its dramas: contexts where people can ask concrete questions and get practical advice. Educational methods for explaining percentages cannot replace the loss of context. People who get genetic risk information need to know more about the disease they are at risk of developing. They may want to know if they should notify the employer of the risk. They may want to know if something can be done to reduce the risk. They may want to know what it is like to live with the disease, or with the risk of getting it. How is the family affected? Can you work having the disease? Should one worry or is it reasonable to hope that one will not get the disease? And so on.

In short, well-functioning genetic risk information has two dimensions. First, an individual dimension: “You have a greatly increased risk of…” Secondly, a general dimension: Practical instructions on a wide variety of issues that people need to know more about, and about which they otherwise begin to fantasize.

To speak the language of the theater: The individual dimension (the simple risk message) is the lines. The general dimension is the stage directions. Genetic risk information consists of both lines and stage directions.

When we discuss whether genetic risk information empowers people to influence their future health or just worries them, when we discuss the difficulty of understanding risk information, we should be clearly aware of these two dimensions of the information. Are we discussing the lines or the stage directions? Or are we discussing the lines together with the stage directions?

Which dimension of genetic risk information is most relevant to the individual? Perhaps the lines are merely a reason for moving on to the stage directions. The dramatic risk lines may speak mainly to the healthcare staff, while the individual above all needs the stage directions.

One could not work at a theater without distinguishing between lines and stage directions. Perhaps something similar applies to genetic risk information.

Pär Segerdahl

This post in Swedish

Minding our language - the Ethics Blog

1 Comment | Musings | Tagged: , , | Permalink
Posted by Pär Segerdahl

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

1 Comment | In the research debate | Tagged: , , , , | Permalink
Posted by Pär Segerdahl

« Previous Entries
Next Entries »
%d bloggers like this: