The Ethics Blog

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

Category: In the research debate (Page 25 of 37)

Identifying individuals while protecting privacy

24 August, 2016 / / 0 Comments

Pär SegerdahlResearch ethics is complex and requires considering issues from several perspectives simultaneously. I’ve written about the temptation to reduce research ethics to pure protection ethics. Then not as much needs to be kept in mind. Protection is the sole aim, and thinking begins to resemble the plot of an adventure film where the hero finally sets the hostages free.

Protection is of course central to research ethics and there are cases where one is tempted to say that research participants are taken hostage by unscrupulous scientists. Like when a group of African-American men with syphilis were recruited to a research study, but weren’t treated because the researchers wanted to study the natural course of the disease.

Everyday life is not one big hostage drama, however, which immediately makes the issues more complex. The researcher is typically not the villain, the participant is not the victim, and the ethicist is not the hero who saves the victim from the villain. What is research ethics in everyday situations?

There is currently a growing concern that coding of personal data and biospecimens doesn’t sufficiently protect research participants from privacy invasions. Hackers hired to test the security of research databases have in some cases been able to identify the individuals who provided their personal data to research (in the belief that the link to them had been made inaccessible to outsiders through advanced coding procedures). Such re-identified information can obviously harm participants, if it falls into the wrong hands.

What is the task of research ethics here? Suddenly we can begin to discern the outlines of a drama in which the participant risks becoming the victim, the researcher risks becoming the villain’s accomplice, and the ethicist rushes onto the scene and rescues the victim by making personal data in research databases completely anonymous, impossible to identify even for researchers.

But everyday life hasn’t collapsed yet. Perhaps we should keep a cool head and ask: Why are personal data and biological samples not fully anonymized, but coded so that researchers can identify individual patients/research participants? The answer is that it’s necessary to achieve scientific results (and to provide individual patients the right care). Discovering relationships between genetics, lifestyle and disease requires running several registries together. Genetic data from the biobank may need to be linked to patient records in healthcare. The link is the individual, who therefore must be identifiable to the research, through the use of advanced code keys.

The need to identify participants is particularly evident in research on rare diseases. Obviously, there is only scant data on these diseases. The data needs to be shared between research groups, often in different countries, in order to collect enough data for patterns to appear, which can lead to diagnoses and treatments.

An overly dramatic heroic effort to protect privacy would have its own victims.

In an article in the European Journal of Human Genetics, Mats G. Hansson and co-authors develop a different, more sustainable ethical response to the risk of re-identification.

Respecting and protecting participants’ privacy is, of course, a central concern in the article. But protection isn’t the only perspective, since science and health care are ethical values too. And here you need to be able to identify participants. The task the authors assume, then, is that of discussing the risks of re-identification, while simultaneously considering the needs for identifiable data.

The authors are, in other words, looking for a balance between different values: simply because identifiable data are associated with both risks and benefits.

You can read a summary of the article on the CRB website. What I focus on in this post is the authors’ overall approach to research ethics, which doesn’t emphasize the hero/villain/victim opposition of certain dramatic situations.

The public image of research ethics is very much shaped by its function in response to research scandals. But research ethics is usually, and less dramatically, about making everyday life function ethically in a society which contains research. Making everyday life run smoothly is a more complex and important task than playing the hero when everyday life breaks down. In this work, more values and challenges need to be taken into account simultaneously than in emergency scenarios where ethicists, very naturally, focus on protection.

Everyday life may not be as exciting as a research scandal, but if we don’t first and foremost take responsibility for making everyday life work smoothly, as a complex whole, then we can expect more drama.

Keep a cool head and consider the issues from a variety of perspectives!

Pär Segerdahl

Hansson, M. G. et al. The risk of re-identification versus the need to identify individuals in rare disease research. European Journal of Human Genetics, advance online publication, 25 May 2016; doi: 10.1038/ejhg.2016.52

This post in Swedish

Approaching future issues - the Ethics Blog

Genetic screening before pregnancy?

20 June, 2016 / / 0 Comments

Pär SegerdahlGenetic diseases can arise in strange ways. So-called recessive diseases require that both parents have the gene for the disease. The parents can be healthy and unaware that they are carriers of the same non-dominant disease gene. In these cases, the risk that the child develops the disease is 25 percent.

In families with a history of some recessive disease, as well as in communities where some serious recessive disease is common, genetic screening before pregnancy is already used – to determine whether couples that are planning a child are, so to speak, genetically compatible.

As these genetic tests have become more reliable and affordable, one has begun to consider offering preconception genetic screening to whole populations. Since one doesn’t know then exactly which genes to look for, it’s not just about screening more people, but also about testing for more recessive traits. This approach has been termed expanded carrier screening (ECS).

In the Netherlands, a pilot project is underway, but the ethical questions are many. One concerns medicalization, the risk that people begin to think of themselves as being more or less genetically compatible with each other, and feel a demand to test themselves before they form a couple and plan children.

Sweden has not yet considered offering expanded carrier screening to the population and the ethical issues have not been discussed. Amal Matar, PhD student at CRB, decided to start investigating the issues in advance. So that we are prepared and can reason well, if preconception expanded carrier screening is suggested.

The first study in the PhD project was recently published in the Journal of Community Genetics. Interviews were made with clinicians and geneticists, as well as with a midwife and a genetic counselor, to examine how this type of genetic screening can be perceived from a Swedish health care perspective.

Ethical issues raised during the interviews included medicalization, effects on human reproductive freedom, parental responsibility, discrimination against diseased and carriers, prioritization of resources in health care, as well as uncertainties about what to test for and how to interpret results.

The study serves as an empirical exploration of the ethical issues. Some of these issues will be examined philosophically further on in Amal Matar’s project.

(Read more about Amal Matar and her work at CRB here.)

Pär Segerdahl

Matar, A., Kihlbom, U., Höglund, A.T. Swedish healthcare providers’ perceptions of preconception expanded carrier screening (ECS) – a qualitative study. Journal of Community Genetics, DOI 10.1007/s12687-016-0268-2

This post in Swedish

We like challenging questions - the ethics blog

Research ethics is not only protection ethics

6 June, 2016 / / 0 Comments

Pär SegerdahlSystems for ethical review of research would never have been developed if it were not for the need to protect research participants from being exploited, exposed to excessive risks, or injured.

Considering how several research scandals strengthened this protection motive, it is easy to believe that protection is the sole aim of research ethics. This is not the case.

The starting point has always been that research is something worthwhile; something ethically important. Medical research provides knowledge that can lead to better diagnoses and more effective treatments. The humanities and social sciences can provide knowledge that supports more informed debates and more thoughtful political decisions.

Ethics review is about striking a balance between ethical values. Are the risks in proportion to the value of the research? Are the risks minimized, or can the research questions be examined more safely? Are research participants properly informed about the research purpose and the risks that participation might entail? Do they get the opportunity to freely decide whether to participate or not?

The “novelty” of research ethics is thus the balancing of ethical values. It’s not that ethical values are turned against research, for research itself is regarded as an ethical value. Also researchers are learning to balance values when they plan their research. The balancing is done not only in the review system, then, but pervades research itself more and more.

Doing the balancing is rarely easy. Moreover, as already mentioned, it is easy to overlook the starting point: that research is regarded as a value. This invites interpreting research ethics as pure protection ethics, which threatens to make ethics review one-sided.

For these reasons, well-written manuals are needed for members of ethical review boards, and for researchers. Manuals that not only inform about regulations and legislation, but also discuss the difficulties of balancing ethical values, and highlight how research ethics is “balance ethics” and not just protection ethics (except when protection law applies).

A new book, Balanced Ethics Review (Springer 2016), by Simon N. Whitney, is such a manual. It is written from within the American review system. But by openly discussing the difficulties of balancing ethical values, and by bringing to the fore how research ethics functions as “balance ethics,” the book has greater universality. – Perhaps precisely where the need for guidance is greatest.

Pär Segerdahl

This post in Swedish

We recommend readings - the Ethics Blog

Direct brain communication: a new book

17 May, 2016 / / 0 Comments

Pär SegerdahlImages of the brain, created with advanced technology, are known to most of us. But progress in neuroscience is fast. Less familiar are new technical opportunities to communicate directly with the brain … or however you put it!

Even the unconscious brain is alive. It has been possible to depict responses in the “unconscious” brain to what occurs in its environment. In some cases one has been able to establish communication, where the “unconscious” patient answers yes/no-questions by thinking of one thing if the answer is “yes” and on another thing if the answer is “no.” This activates different parts of the brain. Since researchers/doctors can detect which part of the brain is activated, the patient can answer questions and communicate with the outside world. (Here is an earlier post on this.)

Other examples of this development are new interfaces between brain and computer, where people learn to control a computer, not through the muscles, but via electrodes connected in the brain. People who cannot communicate verbally can thus get computer support. They can also learn to control prostheses. The brain is obviously exceptionally plastic and interactive!

A new anthology, with Michele Farisco and Kathinka Evers from CRB as editors, systematically assesses the philosophical, scientific, ethical and legal issues that this development implies: Neurotechnology and Direct Brain Communication (Routledge, 2016).

The book addresses scientific and clinical implications of the possibility to communicate with patients who may not be quite as unconscious as we thought. Perhaps we should rather talk about altered states of consciousness. But also infant care is discussed, as well as ethical and legal issues about authority, informed consent and privacy.

The book is written for researchers and graduate students in cognitive science, neurology, psychiatry, clinical psychology, medicine, medical ethics, medical technology, neuroethics, neurophilosophy and philosophy of mind. It may interest also healthcare professionals and a broader public fascinated by the mind.

Michele Farisco and Kathinka Evers both work in the European flagship project, Human Brain Project.

(You find more information about the book and about the editors here.)

Pär Segerdahl

This post in Swedish

We recommend readings - the Ethics Blog

Oppositional words simplify thought: A or B?

3 May, 2016 / / 0 Comments

Pär SegerdahlParties can stand in opposition to each other. But so can words. The word good stands in opposition to the word bad; the word right to the word wrong. And in everyday talk, the word human stands in opposition to the word animal.

Oppositional words are efficient in conversation. If I tell you that I saw an animal, you immediately know that it wasn’t a human I saw. Oppositional words are splendid communicational instruments. They enable quick inferences, like the one about what I saw and didn’t see.

However, oppositional words are not always good to think with. This sounds odd, because we associate thinking with inferences. If oppositional words support inferences, shouldn’t they be absolutely essential to thinking?

The problem is that oppositions support quick inferences, when we need slow ones. They assume a given order, when we need to explore a neglected order.

This we felt intensely at the seminar last Monday, when we discussed empirical ethics. More and more bioethicists do empirical studies (questionnaires, interviews, etc.) of how people look at medical research and care. Based on the empirical studies they then develop normative conclusions, for example, about how ethical guidelines should be formulated.

Empirical ethics thereby seems to sin against a fundamental opposition: that between is and ought. If it is a fact that people from time immemorial cut off the hands of thieves (and thought one should do so), it still does not follow from this fact that one ought to cut off the hands of thieves.

One might say: the is/ought-opposition supports quick inferences about what kind of inferences one cannot make: from an is an ought cannot be extrapolated.

Empirical ethics immediately appears like a ridiculous error. Nothing normative can be derived from mere facts disclosed by surveys and interviews. If such inferences nonetheless are made, they are illegitimate. Empirical studies drain bioethics of normativity, by scooping out of the wrong well.

But is this an accurate description of empirical ethics? Is it just a mistake; like trying to scoop water out of a dry well?

It is easy to accuse empirical ethics in terms of the is/ought-opposition. This makes it seductively easy to think that the only way of defending empirical ethics is by either showing that it honors the is/ought-opposition or rejecting the opposition as false.

– As if oppositions had to be either true or false: another opposition!

You notice here how oppositional words, which work well in conversation, push our thoughts now in this direction, now in that. Instruments that support us when we talk can give us paralyzing shocks when we think. (Don’t try to talk your way out of philosophical problems!)

The discussion about empirical ethics is likely to continue at the seminar. I’m looking forward to it.

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

19 April, 2016 / / 27 Comments

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. Even with the best of intent, researchers who publish in these journals inadvertently subject themselves to criticism. 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. This trend, referred to by some as the dark side of publishing, needs to be reversed.

Gert Helgesson, Professor of Medical Ethics, Karolinska InstitutetPeople have for a number of years now turned to Jeffrey Beall, a librarian at the University of Colorado, who runs blacklists of “potential, possible, or probable” predatory publishers and journals. His lists are not, however, the final say on the matter, as it is impossible to judge reliably actors in every academic discipline. Moreover, since only questionable journals are listed, the good journals must be found elsewhere. We are much obliged to his work but think that a response of gatekeeping needs also to be anchored in each discipline.

As a suitable response in bioethics, we have chosen the following approach: Below, we alphabetically list the recommended journals in our field that either have an impact over one, as calculated by Thomson Reuters over a five year period, and a good reputation (still no potentially predatory journal in bioethics have received such a high IF, but it might happen), or by our own experience have been found to be of high quality when engaging with them as authors, reviewers and/or readers (and agreed upon by all those involved as authors of this blog post or as reference persons for the lists).

This will make up a list of English-language journals that are reputable, trustworthy and have real impact. Of course we are well aware there are many more journals out there with a lower impact that we have no experience of; many of them will provide good service to authors and readers. There are other lists covering bioethics journals, such as:

They are all of great use when further exploring the reputable journals available.

It is also important to list the journals that are potentially or possibly predatory or of such a low quality that it might be disqualifying to engage with them. We have listed them 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). If we have critical remarks ourselves, we have added them.

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 persons 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:

In light of the fact that all journals on the “where not to publish”-list so far are Open Access (OA), we want to stress our general support for various OA initiatives, while also acknowledging the problems (see the Schöpfel paper referenced at the end of this post).

We would love to hear about your views on these lists, and be especially grateful for pointers to journals engaging in sloppy or bad publishing practices. The lists are not meant as check-lists but as starting points and assistance 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 TO PUBLISH – THE 2016 LIST

Alphabetical list, criteria explained in text above. 5-year impact factors from 2015, rounded off with one decimal, given in parenthesis, if over 1.

  • Accountability in Research
  • American Journal of Bioethics (4.0)
  • Bioethics (1.5)
  • Biology & Philosophy (1.2)
  • BMC Medical Ethics (1.7)
  • Cambridge Quarterly of Health Care Ethics
  • Clinical Ethics
  • Developing World Bioethics (1.7)
  • Ethics (1.8)
  • Ethics and Information Technology (1.1)
  • Hastings Center Report (1.4)
  • Health Care Analysis (1.2)
  • Journal of Academic Ethics
  • Journal of Agricultural & Environmental Ethics (1.1)
  • Journal of Clinical Ethics
  • Journal of Empirical Research on Human Research Ethics (1.4)
  • Journal of Law, Medicine and Ethics (1.1)
  • Journal of Medical Ethics (1.4)
  • Journal of Medicine & Philosophy
  • Kennedy Institute of Ethics Journal (1.1)
  • Medicine Health Care & Philosophy
  • Milbank Quarterly (6.3)
  • Neuroethics (1.2)
  • Nursing Ethics (1.6)
  • Public Health Ethics (1.1)
  • Research Ethics
  • Science & Engineering Ethics (1.1)
  • Science, Technology and Human Values (2.5)
  • Social Science and Medicine (3.5)
  • Theoretical Medicine and Bioethics

WHERE NOT TO PUBLISH – THE 2016 LIST

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 papers to show up, it is about quality, and as such it is an expression of a professional judgement intended to help others find good journals to publish with. 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

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

Global bioethics: each culture its own “ethnobioethics”?

6 April, 2016 / / 0 Comments

Pär SegerdahlWith globalization bioethics is spread over the world. The process isn’t without friction, since bioethics is associated with Western philosophy. Is that thinking applicable to other cultures? Parts of the world where bioethics is spread may also have a colonial history, such as Africa. Should they now once again come under Western influence?

In an article in the Cambridge Quarterly of Healthcare Ethics, Sirkku K. Hellsten discusses the role of philosophy in global bioethics. She uses the example of Africa, where discussions about a unique African philosophy have been intense. But she also quotes Henry Odera Oruka, wondering why so much time is spent discussing what distinguishes African philosophy, when so little time is devoted to actually practicing it.

To investigate the role of philosophy in global bioethics, Hellsten distinguishes (inspired by Odera Oruka) four forms of philosophy. I reproduce two of them here:

  1. Ethnophilosophy: Here it is assumed that different cultures often have incommensurable conceptions and worldviews. Bioethical key concepts – personhood, rationality, autonomy, consent, human nature, human well-being – have as many interpretations as there are cultures. The aim seems to be to develop these interpretations of Western ethical concepts and principles, to develop culture specific “ethnobioethics.”
  2. Professional philosophy: Professional philosophers, says Hellsten, are academically trained in critical, impartial, logical argument. (She distinguishes professional philosophy from the ideological tendencies of Peter Singer and John Harris). Although professional philosophers are influenced by their culture, they can recognize these biases and subject them to self-critical examination. Professional philosophy is self-correcting.

Hellsten points out that ethnophilosophical thinking, in its quest to carve out culture specific “ethnophilosophies,” on the contrary tends to make sweeping generalizations about cultural views, creating false oppositions. Moreover, ethnophilosophical thinking is at risk justifying double standards in biomedical practices. It can make it seem reasonable to ask for individual consent in individualistic cultures but not in collectivist.

Hellsten suggest that what global bioethics needs is professional philosophy. It can impartially scrutinize arguments and reveal contradictions and unclear thinking, and it can keep ethics at arm’s length from politics and rhetoric. It is a universal form of human thought that should be accessible to all cultures. Through professional philosophy, global bioethics can become universal bioethics.

What do think about this? I believe that Hellsten’s emphasis of “universality” does not quite strikingly describe the point I think she actually has. In order to understand in what sense she has a point, I believe we need to understand that bioethics is not only as a form of “thinking,” but also a concrete component of contemporary social structure.

Law (to take another example) isn’t just a form of “thinking” but also an organized part of the social structure: a legal system. During the twentieth century, we saw the birth of bioethics as another part of the social structure: as an organized way to deal with certain issues of health care and biomedical research (other parts of the social structure). Bioethics therefore has an obvious place in the social structure, and that place is: the university, with its resources for research and education.

So where do I locate Hellsten’s point when she claims professional philosophy’s role in global bioethics? Not in the view that professional philosophy supposedly is “universal thinking,” but in the fact that the university is the place of bioethics in the social structure. If we build hospitals and invest in advanced medical research and education, and if we develop legislation for these activities, it is in the university that bioethics finds the resources it needs to play its role.

So why is “professional philosophy” relevant for bioethics in Africa? In my view, precisely because one builds hospitals and makes investments in medical research and education. It would be odd if the efforts to build such a society were combined with an emphasis on tradition-bound “ethnophilosophy.”

We need to be clear about where we are: in the midst of an ongoing construction of society. And we need to be clear about the fact that ethics, in addition to being a personal concern, also has become an important “apparatus” in the social structure. In Africa, and elsewhere, it will certainly be faced with unique bioethical issues, like the legal system is faced with unique problems in different parts of the world.

At the same time, it is important to emphasize, as Hellsten does, the open and self-critical nature of global bioethics.

(I want to thank the Global Bioethics Blog for drawing my attention to Hellsten’s article.)

Pär Segerdahl

This post in Swedish

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

Critique of the motivation for dynamic consent to biobank research

23 March, 2016 / / 0 Comments

Pär SegerdahlBiobank research has undeniably challenged research ethics and the requirement for informed consent. We are after all dealing with collection of biological samples for future, yet unspecified research. Thus, one cannot give donors specific information about the research in which their samples will be used. It might seem like asking them to consent to unknown research projects x, y, z.

While some argue that broad consent for future research is specific enough to be genuine consent to something – one can inform about the framework that applies to the research – others argue that biobank research undermines the autonomy of research participants. Something must therefore be done about it.

Dynamic consent is such a proposed measure. The idea is that participants in biobank research, through a website, will be kept continuously informed about planned research, and continually make decisions about their participation. Through this IT measure, participants are placed at the center of decision making process rather than transferring all power to the researchers. Dynamic consent empowers research participants and supports their autonomy, it is claimed.

In an article in the journal Bioethics, Linus Johnsson and Stefan Eriksson critically examine the understanding of autonomy in the debate on dynamic consent.

First, the authors argue that autonomy is misunderstood as a feat. Autonomy is rather a right people have to decide for themselves what to do in situations that matter to them.

Second, they argue that the concept of autonomy is used too broadly, hiding important distinctions. In fact, three different ways of respecting people are conflated:

  1. Autonomy: respecting people’s right to decide for themselves about what to do.
  2. Integrity: respecting people’s right to draw the lines between private and social life.
  3. Authority: respecting people’s right to take responsibility for themselves, for their families, and for their relations to society.

Authority is respected by empowering people: by giving them the tools they need to live responsibly. In dynamic consent, the website is such a tool. It empowers participants to act as responsible citizens concerning the planning and carrying out of research in society.

By separating three forms of respect which are confused as “autonomy,” the authors can propose the following critical analysis of the motivation for dynamic consent. Rather than respecting people’s right to decide for themselves about what to do, the aim is to empower them. But if the empowerment forces them to sit in front of the computer to be informed, it violates their integrity.

Such intrusion could be justified if medical research were a suitable arena for people’s empowerment as citizens – an assumption which the authors point out is doubtful.

Pär Segerdahl

Johnson, L. and Eriksson, S. 2016. “Autonomy is a right, not a feat: How theoretical misconceptions have muddled the debate on dynamic consent to biobank research.” Bioethics, DOI: 10.1111/bioe.12254

This post in Swedish

We challenge habits of thought : the Ethics Blog

Searching for consciousness needs conceptual clarification

15 March, 2016 / / 2 Comments

Michele FariscoWe can hardly think of ourselves as living persons without referring to consciousness. In fact, we normally define ourselves through two features of our life: we are awake (the level of our consciousness is more than zero), and we are aware of something (our consciousness is not empty).

While it is quite intuitive to think that our brains are necessary for us to be conscious, it is tempting to think that looking at what is going on in the brain is enough to understand consciousness. But empirical investigations are not enough.

Neuroscientific methods to investigate consciousness and its disorders have developed massively in the last decades. The scientific and clinical advancements that have resulted are impressive. But while the ethical and clinical impacts of these advancements are often debated and studied, there is little conceptual analysis.

I think of one example in particular, namely, the neuroscience of disorders of consciousness. These are states where a person’s consciousness is more or less severely damaged. Most commonly, we think of patients in vegetative state, who exhibit levels of consciousness without any content. But it could also be a minimally conscious state with fluctuating levels and contents of consciousness.

How can we explain these complex conditions? Empirical science is usually supposed to be authoritative and help to assess very important issues, such as consciousness. Such scientific knowledge is basically inferential: it is grounded in the comparative assessment of residual consciousness in brain-damaged patients.

But because of its inferential nature, neuroscience takes the form of an inductive reasoning: it infers the presence of consciousness starting from data extracted by neurotechnology. This is done by comparing data from brain damaged patients with data from healthy individuals. Yet this induction is valid only on the basis of a previous definition of consciousness, a definition we made within an implicit or explicit theoretical framework. Thus a conceptual assessment of consciousness that is defined within a well-developed conceptual framework is crucial, and it will affect the inference of consciousness from empirical data.

When it comes to disorders of consciousness, there is still no adequate conceptual analysis of the complexity of consciousness: its levels, modes and degrees. Neuroscience often takes a functionalist account of consciousness for granted in which consciousness is assumed to be equivalent to cognition or at least to be based in cognition. Yet findings from comatose patients suggest that this is not the case. Instead, consciousness seems to be grounded on the phenomenal functions of the brain as they are related to the resting state’s activity.

For empirical neuroscience to be able to contribute to an understanding of consciousness, neuroscientists need input from philosophy. Take the case of communication with speechless patients through neurotechnology (Conversations with seemingly unconscious patients), or the prospective simulation of the brain (The challenge to simulate the brain) for example: here scientists can give philosophers empirical data that need to be considered in order to develop a well-founded conceptual framework within which consciousness can be defined.

The alleged autonomy of empirical science as source of objective knowledge is problematic. This is the reason why philosophy needs to collaborate with scientists in order to conceptually refine their research methods. On the other hand, dialogue with science is essential for philosophy to be meaningful.

We need a conceptual strategy for clarifying the theoretical framework of neuroscientific inferences. This is what we are trying to do in our CRB neuroethics group as part of the Human Brain Project (Neuroethics and Neurophilosophy).

Michele Farisco

This post in Swedish

We want solid foundations - the Ethics Blog

Resignation syndrome in refugee children – a new hypothesis

22 February, 2016 / / 6 Comments

Pär SegerdahlThere has been much discussion about the so-called “apathetic children” in families seeking asylum in Sweden. You read that right: in Sweden, not in other countries. By all accounts, these children are genuinely ill. They do not simulate total lack of willpower; like inability to eat, speak and move. They are in a life-threatening condition and show no reactions even to painful stimuli. But why do we have so many cases in Sweden and not in other countries?

Several hundred cases have been reported, which in 2014 led the Swedish National Board of Health and Welfare to introduce a new diagnosis: resignation syndrome. The “Swedish” syndrome appears to be a mystery, almost like a puzzle to crack. There are asylum seeking families all around the world: why does this syndrome occur to such an extent in a single country?

If you want to think more about this puzzling question, I recommended a new article in Frontiers in Behavioral Neuroscience, with Karl Sallin (PhD student at CRB) as first author. The article is long and technical, but for those interested, it is well worth the effort. It documents what is known about the syndrome and suggests a new hypothesis.

A common explanation of the syndrome is that it is a reaction to stress and depression. The explanation sounds intuitively reasonable, considering these children’s experiences. But if it were true, the syndrome should occur also in other countries. The mystery remains.

Another explanation is that the mother attempts to manage her trauma, her depression and her needs, by projecting her problems onto the child. The child, who experiences the mother as its only safety, adapts unconsciously and exhibits the symptoms that the mother treats the child as if it had. This explanation may also seem reasonable, especially considering another peculiarity of the syndrome: it does not affect unaccompanied refugee children, only children who arrive with their families. The problem is again: traumatized refugee families exist all around the world. So why is the syndrome common only in Sweden?

Now to Sallins’ hypothesis in the article. The hypothesis has two parts: one about the disease or diagnosis itself; and one about the cause of the disease, which may also explain the peculiar distribution.

After a review of symptoms and treatment response, Sallin suggests that we are not dealing with a new disease. The introduced diagnosis, “resignation syndrome,” is therefore inappropriate. We are dealing with a known diagnosis: catatonia, which is characterized by the same loss of motor skills. The children moreover seem to retain awareness, even though their immobility makes them seem unconscious. When they recover, they can often recall events that occurred while they were ill. They just cannot activate any motor skills. The catatonia hypothesis can be tested, Sallin suggests, by trying treatments with known responses in catatonic patients, and by performing PET scans of the brain.

The question then is: Why does catatonia arise only in refugee children in Sweden? That question brings us to the second part of the hypothesis, which has some similarities with the theory that the mother affects the child psychologically to exhibit symptoms: really have them, not only simulate them!

Here we might make a comparison with placebo and nocebo effects. If it is believed that a pill will have a certain impact on health – positive or negative – the effect can be produced even if the pill contains only a medically inactive substance. Probably, electromagnetic hypersensitivity is a phenomenon of this kind, having psychological causes: a nocebo effect.

The article enumerates cases where it can be suspected that catatonia-like conditions are caused psychologically: unexpected, unexplained sudden death after cancer diagnosis; death epidemics in situations of war and captivity characterized by hopelessness; acute or prolonged death after the utterance of magic death spells (known from several cultures).

The hypothesis is that life-threatening catatonia in refugee children is caused psychologically, in a certain cultural environment. Alternatively, one could say that catatonia is caused in the meeting between certain cultures and Swedish conditions, since it is more common in children from certain parts of the world. We are dealing with a culture bound psychogenesis.

Sallin compares with an outbreak of “hysteria” during the latter part of the 1800s, in connection with Jean-Martin Charcot’s famous demonstrations of hysterical patients, and where colorful symptom descriptions circulated in the press. Charcot first suggested that hysteria had organic causes. But when he later began to talk about psychological factors behind the symptoms, the number of cases of hysteria dropped.

(Perhaps I should point out that Sallin emphasizes that psychological causes are not to be understood in terms of a mind/body dualism.)

It remains to be examined exactly how meeting Swedish conditions contribute to psychologically caused catatonia in children in certain refugee families. But if I understand Sallin correctly, he thinks that the spread of symptom descriptions through mass media, and the ongoing practice of treating “children with resignation syndrome,” might be essential in this context.

If this is true, it creates an ethical problem mentioned in the article. There is no alternative to offering these children treatment: they cannot survive without tube feeding. But offering treatment also causes new cases.

Yes, these children must, of course, be offered care. But maybe Sallin, just by proposing psychological causes of the symptoms, has already contributed to reducing the number of cases in the future. Assuming that his hypothesis of a culture bound psychogenesis is true, of course.

What a fascinating interplay between belief and truth!

Pär Segerdahl

Sallin, K., Lagercrantz, H., Evers, K., Engström, I., Hjern, A., Petrovic, P., Resignation Syndrome: Catatonia? Culture-Bound? Frontiers in Behavioral Neuroscience 29, January 2016

This post in Swedish

We like challenging questions - the ethics blog

« Older posts Newer posts »