The Ethics Blog

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

Category: In the research debate (Page 28 of 37)

The Swedish Data Protection Authority rejects extension of temporary law on registry research

28 April, 2015 / / 0 Comments

Pär SegerdahlSince the new Swedish law on research databases is delayed, there is a proposal to extend the current temporary law on certain registries for research about what heredity and environment mean for human health (until December 31, 2017).

The Swedish Data Protection Authority rejects extension, because major deficiencies noted previously have not been addressed and since the requirements for purpose identifications are not sufficiently specific and explicit.

Regarding specific and explicit purposes, the Authority gives special weight to a statement by the European so-called Article 29 Working Party, cited in the opinion:

  • “The purpose of the collection must be clearly and specifically identified: it must be detailed enough to determine what kind of processing is and is not included within the specific purpose, and to allow that compliance with the law can be assessed and data protection safeguards be applied. For these reasons a purpose that is vague and general, such as for instance ‘improving user’s experience’, ‘marketing purposes’, ‘IT-security purposes’ or ‘future research’ will – without more detail – usually not meet the criteria of being ‘specific’.”

This I regard as problematic in two ways.

First: In the cited statement the Article 29 Working Party equates the purpose “future research” with purposes like “improving the user experience” and “marketing purposes”. It is unclear if one can equate research purposes with such purposes, since researchers do not intend to return to the persons whose data are collected, to give them specifically profiled consequences. Personal data circulate in a categorically different way in research.

Secondly: The website of the Article 29 Working Party begins with a disclaimer. The group emphasizes that all material on the website solely reflects the group’s views, not the position of the European Commission. The group only has an advisory status and acts independently.

The group’s reasoning about research purposes can be questioned, and it seems to relinquish at least some of the authority that the Data Protection Authority ascribes to it in its opinion.

Pär Segerdahl

Approaching future issues - the Ethics Blog

Teaching the child the concept of what it learns

21 April, 2015 / / 0 Comments

Pär SegerdahlIt is natural to think that a child, who learns to speak, learns precisely that: simply to speak. And a child who learns addition learns precisely that: simply to add.

But is speaking “simply speaking” and is adding “simply adding”?

Imagine a very young child who is beginning to say what its parents recognize as the word “mummy.” The parents probably respond, enthusiastically:

  • “Oh, you said mummy!”

By repeating “mummy,” the parents naturally assume they support the child to say mummy again. Their focus is entirely on “mummy”: on the child’s saying of “mummy” and on their repetitions of “mummy.” By encouraging the child to say “mummy” again (and more clearly), they are teaching the child to speak.

No doubt their encouraging repetitions do support the child. However, the parents didn’t merely repeat “mummy.” They also said:

  • “Oh, you said mummy!”

From the very first words a child utters, parents respond not only by repeating what the child says, but also by speaking about speaking:

  • “Say daddy!”
  • “Do you want to speak to mummy?”
  • “You said you wanted cookies”
  • “Which cookie did you mean?”
  • “What’s your name?”
  • “What you said isn’t true”
  • “Don’t use that word!”

Parents’ natural attitude is that they teach the child simply to speak. But, more spontaneously, without intending or noticing it, they initiate the child into the notions of speaking. One might call this neglected dimension of teaching: the reflexive dimension. When we teach the child X, we simultaneously initiate it into the reflexive notions of X: into the concept of what it learns.

This should apply also to learning addition, and I assume to just about anything we learn. There is an easily neglected initiation into a reflexive dimension of what is learned.

I suppose one reason why the reflexive dimension is neglected is that it is what enables talk about what the child learns. Reflexivity draws our attention away from itself, and thus from the fact that the child not simply learns what learns, but also the concept of what it learns.

If you want to read more about reflexive practices – how they are acquired, how they practically contribute to making language what it is (said to be); how they tend to be intellectually sublimated as theories of language – I want to recommend the writings of Talbot J. Taylor.

One article by Taylor that especially clearly demonstrates the early onset of reflexive language use in children  is:

Taylor’s work on reflexivity challenges me to reconsider the nature of philosophy. For philosophy seems to be concerned with the kind of notions we fail to notice we initiate children into, when we say, “You said mummy!”

Philosophy is “about” what we don’t notice we learn as children.

Pär Segerdahl

Minding our language - the Ethics Blog

Neuroethics: new wine in old bottles?

7 April, 2015 / / 0 Comments

Michele FariscoNeuroscience is increasingly raising philosophical, ethical, legal and social problems concerning old issues which are now approached in a new way: consciousness, freedom, responsibility and self are today investigated in a new light by the so called neuroethics.

Neuroethics was conceived as a field deserving its own name at the beginning of the 21st century. Yet philosophy is much older, and its interest in “neuroethical” issues can be traced back to its very origins.

What is “neuroethics”? Is it a new way of doing or a new way of thinking ethics? Is it a sub-field of bioethics? Or does it stand as a discipline in its own? Is it only a practical or even a conceptual discipline?

I would like to suggest that neuroethics – besides the classical division between “ethics of neuroscience” and “neuroscience of ethics” – above all needs to be developed as a conceptual assessment of what neuroscience is telling us about our nature: the progress in neuroscientific investigation has been impressive in the last years, and in the light of huge investments in this field (e.g., the European Human Brain Project and the American BRAIN Initiative) we can bet that new  striking discoveries will be made in the next decades.

For millennia, philosophers were interested in exploring what was generally referred to as human nature, and particularly the mind as one of its essential dimensions. Two avenues have been traditionally developed within the general conception of mind: a non-materialistic and idealistic approach (the mind is made of a special stuff non-reducible to the brain); and a materialistic approach (the mind is no more than a product or a property of the brain).

Both interpretations assume a dualistic theoretical framework: the human being is constituted from two completely different dimensions, which have completely different properties with no interrelations between them, or, at most, a relationship mediated solely by an external element. Such a dualistic approach to human identity is increasingly criticized by contemporary neuroscience, which is showing the plastic and dynamic nature of the human brain and consequently of the human mind.

This example illustrates in my view that neuroethics above all is a philosophical discipline with a peculiar interdisciplinary status: it can be a privileged field where philosophy and science collaborate in order to conceptually cross the wall which has been built between them.

Michele Farisco

We transgress disciplinary borders - the Ethics Blog

Is it ethical that uninformed members of the public decide just how bad your disability is? (By Terry Flynn)

31 March, 2015 / / 0 Comments

Terry FlynnLast time I raised the possibility of changing child health policy because teenagers are more likely than adults to view mental health impairments as being the worst type of disability. However, today I consider adults only in order to address a more fundamental issue.

Imagine you had an uncommon, but not rare, incurable disease that caused you to suffer from both “moderate” pain and “moderate” depression and neither had responded to existing treatments. If policy makers decided there were only enough funds to try to help one of these symptoms, who decides which should get priority?

In most of Europe, perhaps surprisingly, it would not be you the patient, nor even the wider patient group suffering from this condition. It is the general population. Why? The most often quoted reason will be familiar to those who know the history of the USA: “no taxation without representation”. Tax-payers supposedly fund most health care and their views should decide where this money is most needed. If they consider pain to be worse than depression, then health services should prioritise treatment for pain.

Thus, many European countries have conducted nationally representative surveys to quantify their general public’s views on various health states. Unfortunately Swedish population values were only published last year, almost two decades after the first European country published theirs. Although late, these Swedish population values raise a disturbing issue.

Suppose the general population is wrong?

Why might this be? Many people surveyed are, and always have been, basically healthy. How do they know whether depression is better or worse than pain? In fact, these people tend to say pain would be worse, whilst patients who have experienced both say the opposite.

The Swedish general population study was large and relatively well equipped to investigate how people in ill health value disability. And, indeed, they do value it differently than the average healthy Swedish person.

So is it ethical to disenfranchise patients in order that all citizens, informed or not, have a say?

Why not use the views of patients instead?

Well actually the stated policy in Sweden is that the health values ideally should come from the individuals affected by the health intervention (patients). So Sweden now has the information required to follow its own health policy aims. Perhaps it’s time politicians were asked if it is ethical to prioritise pain over mental health, just because various general populations thought this is so.

As a final thought, I return to the issue of “what funds healthcare”? You may be surprised to learn that the “general taxation” answer is wrong here too. But that strays beyond health care and ethics and into the dark heart of economics, which I will therefore discuss elsewhere next week!

Terry Flynn

We like challenging questions - the ethics blog

Being humans when we are animals

25 March, 2015 / / 0 Comments

Pär SegerdahlMost people know that humans are animals, a primate species. Still, it is difficult to apply that knowledge directly to oneself: “I’m an animal”; “My parents are apes.”

– Can you say it without feeling embarrassed and slightly dizzy?

In a recent paper I explore this difficulty of “bringing home” an easily cited scientific fact:

Why does the scientific “fact” crumble when we apply it directly to ourselves?

I approach this difficulty philosophically. We cannot run ahead of ourselves, but I believe that’s what we attempt if we approach the difficulty theoretically. Say, by theorizing the contrast between humans and animals as an absolute presupposition of human language that science cannot displace.

Such a theory would be as easy to cite as the “fact” and wouldn’t touch our difficulty, the dizziness we feel.

Instead, I explore a personal experience. When I visited a laboratory for ape language research, an ape named Panbanisha told me to be QUIET and later called me a MONSTER. Being reprimanded by an ape made me dizzy about my humanness and about her animality.

How did the dizziness arise? After spending some time with the apes, the vertigo disappeared. How did it disappear?

That’s investigated in the paper by asking further questions, and by recollecting aspects of the meeting with Panbanisha to which those questions drew my attention. The paper offers a philosophical alternative to theory.

Trust your uncertainty and follow your questions!

Pär Segerdahl

Understanding enculturated apes - the ethics blog

Moody teenagers? Giving them a greater say in health policy might solve this (By Terry Flynn)

18 March, 2015 / / 0 Comments

Terry FlynnWe have all heard of moody teenagers. Maybe we have them, or can remember being one. Recent research with my Australian colleagues suggests they may genuinely have more difficulty living with poor mental health than adults do.

Specifically, compared to the general public aged 18+, they are more likely to view mental health related impairments as being worse than physical disabilities.

This is not just an academic curiosity – if true, it means society is probably under-investing in child mental health. To explain why, we must first understand how most European countries decide on health funding priorities.

In general, disabilities with the greatest capacity to benefit from treatment are prioritised. To find out whether pain, depression, or some other, physical, impairment to health is worst – and therefore has the greatest potential benefit from treatment – nations conduct large population-based surveys. These require adults to make choices between lots of possible impaired health states in order to find out just how bad these are, relative to each other.

Of course, people often disagree on what is worst, and by how much, so decisions must be made as to whose values matter most. European nations generally agree that it is unethical to allow the rich to dictate what disabilities are most deserving of resources. Instead of “one € one vote”, it is “one person one vote”: taking a simple average of every adult’s values does this naturally.

Whilst this sounds fair and democratic in terms of process, it could be leading to uncomfortable outcomes for our moody teenager. Why? Well, if poor mental health is genuinely worse for teenagers than adults believe it to be then mental health interventions might not get funded: for example, if adults think pain is much worse, pain medications will be prioritised instead. This is because only adults are being asked for their health values, not teenagers.

So perhaps adults just don’t remember what it’s like to be young and we should use the teenagers’ values for health interventions that affect them?

Maybe not. There is a saying “age brings wisdom” and perhaps adults’ greater experience of illness means their values for mental health impairments are the correct ones. Maybe younger people have simply not experienced enough in life to know what aspects of illness are really worst. After all, immaturity is one reason why younger teenagers are not allowed to vote.

The ethical issues surrounding at what age teenagers can have sex, vote and make independent decisions in public life all become relevant here. However, “one person one vote” has one more disturbing implication that is relevant for people of all ages. By taking an average of everyone’s views, national health state value surveys include lots of healthy people who have no idea what it is like to live with severe illness. Does this matter? Well, it turns out that to the depressed patient in desperate need of a new anti-depressant it probably does.

Patients and the general public tend to disagree on which is worst – extreme pain or extreme depression. The general public gets the final say and my next blog entry will discuss how and why we might use the health values of patients themselves in priority setting instead.

Terry Flynn

We want to be just - the Ethics Blog

Biobank news

3 March, 2015 / / 0 Comments

Pär SegerdahlThe first newsletter for 2015 from CRB and BBMRI.se is now available for reading:

The main news item, by Anna-Sara Lind, is about the still unclear status for a new European data protection regulation (intended to replace the old directive).

You’ll also find items by Josepine Fernow about our blog books, about a newly released anthology on biobank regulation (edited by Debora Mascalzoni), and information about a new online course in research ethics (developed by Stefan Eriksson and given for the first time next autumn).

You’ll also find a link to the PDF version of the newsletter.

Pär Segerdahl

We recommend readings - the Ethics Blog

Open research platforms and open data

11 February, 2015 / / 0 Comments

Pär SegerdahlToday, I recommend reading about two major changes in current research. Both changes are reflected in the December issue of the newsletter:

The changes concern researchers’ relation to their material.

The first change has been discussed on the Ethics Blog. It is that samples and data that individual research groups collect begin to be saved, documented and analyzed in joint biobanks. The material is then made available to other researchers, both nationally and internationally.

This requires an attitude change among researchers who are used to store their data material locally and then use it locally. Now, one sends the material to the biobank instead, which takes care of it and provides service to researchers in the form of analysis, access to more data, advice, and more. Perhaps researchers need not always collect their own material, if relevant data are available via the biobank infrastructure.

This change is discussed in the editorial by Joakim Dillner, Acting director of BBMRI.se, and in an interview with Mark Divers, Head of the biobank facility that BBMRI.se built up at Karolinska Institutet.

The second change has not been discussed on this blog. It is featured in an interview in the newsletter with a researcher in cognitive neurophysiology, Gustav Nilsonne. It is closely related to the first, but requires a change in attitude to what it means to make research available through publication in scientific journals.

The change is about making research open not only through Open Access publication of scientific articles, but also by making raw data available. Such a change is significant in several ways:

  1. Data collected with efforts of many research participants can be used multiple times instead of disappearing in forgotten archives.
  2. Published findings can be critically examined; it becomes more difficult to cheat or be negligent.
  3. It becomes easier to make meta-analysis of data from many studies.

These changes can of course be seen as two sides of the same coin. Researchers seeking services from the biobank facility must accept that other researchers apply for access to “their” data … which thereby become open.

Pär Segerdahl

We recommend readings - the Ethics Blog

Bioethics behind the facade: research and new thinking

28 January, 2015 / / 0 Comments

Pär SegerdahlThe finished result easily becomes a picture of the process of achieving it. For example: We hear a Beethoven symphony and think that the genius had this magnificent composition in his head. He just needed to write it down.

As if the result existed from the beginning and only needed to be put on paper. I don’t know much about Beethoven’s working process, but doubt that it consisted in writing down already completed symphonies. Maybe, during a walk, a tiny idea entered his mind: a theme that made an impression on him, but that definitely was not the finished symphony. Thereafter, he explored the theme, attentive to where it wanted to go and letting it evolve in different forms and variations. Maybe he examined the theme at the piano.

Only gradually did this creative work shift to actually sitting down and composing. But still, as an exploration of the theme, albeit in the final phase of the process. And maybe it turned out that the theme worked better for a string quartet instead.

Bioethics is often misunderstood as we misunderstand Beethoven. We identify bioethics (and research ethics) with the finished result: with ethical guidelines, with the declaration of Helsinki, with models of consent, with the system of ethical review etcetera.

Bioethicists then appear like people who just put ethical rules on paper and establish bureaucratic systems to check that they are followed by researchers.

Bartha M. Knoppers recently questioned that image, in an article with the significant title:

Ethical frameworks for biomedical research originate in processes of ethical research and thinking, often in dialogue with researchers in the field, and with patients and the public. Behind the facade, bioethics is an art of conversation as well as explorative research and new thinking. This work is not the least self-critical, for the ethical frameworks need to be constantly modified and sometimes partially dismantled.

An example of this work behind the facade is a new book on the regulation of biobanking, edited by Deborah Mascalzoni at CRB:

In this book, a number of researchers present their explorations. It gives you insight into the work processes and the conversations and debates behind the regulation of research.

One principal problem raised in the book is that regulatory systems have become increasingly complex and opaque. Should we then create even more regulation?

Deborah Mascalzoni thinks that ethical research is more than just researchers following rules written by bioethicists. Instead of facing new challenges with even more regulation, she points out that all of us can think ethically, and that scientists have a moral responsibility to reflect on how they develop their research practices.

Ethics need not be a burden for research but can be a living concern within it. It can grow and flourish with the research practices, if we dare to do what Beethoven did: trust that seemingly insignificant thoughts and ideas can grow into something beautiful and real.

Pär Segerdahl

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

Rare diseases need international research infrastructure

20 January, 2015 / / 0 Comments

Pär SegerdahlThere are a few thousand diseases that you never heard the name of. They affect so few people and have no names in the common language.

These diseases are usually called rare diseases (or orphan diseases). They often (but not always) have genetic origin. They often affect children, are disabling and can even be life-threatening, and in many cases organ systems in the body degenerate.

Because the diseases are rare, they are difficult for doctors to diagnose. Even if one manages to make a diagnosis, treatments are often lacking. It’s hard to do research and develop treatments when the patient groups are small and scattered across the world.

In recent years one has begun to prioritize research on rare diseases, not least in the EU. A background to this trend is the development of biobank research. It starts to make it possible to do research on rare diseases, even though the patient groups are small and scattered across the world.

How? Since one can collect samples and data from such patient groups in biobanks that are linked with each other in international networks. Biobank networks thus give researchers access to large enough material to identify genetic and other origins of rare diseases. In this way, one can begin to develop diagnoses and treatments for small patient groups spread across the world.

In an article in the Journal of Biorepository Science for Applied Medicine,

twenty researchers, among them Mats G. Hansson, describe trends in research on rare diseases. They mention several international biobank networks developed to make such research possible, and describe the challenges that they have to deal with.

One challenge is to develop a common standard for how to, for example, document and code samples for rare diseases. Otherwise it is difficult to locate relevant samples in biobanks in different parts of the world and use them in research. One also needs to link the samples to electronic health records. Otherwise, the patterns behind the diseases will not be visible to the research.

Another challenge is that ethical review and governance operate at a national level, and often in different ways in different countries. In one case, mentioned in the article, where the researchers needed to use data from 130 patients from 30 different countries (and collaborate with 103 clinical centers), it took two years to get ethical approval of the project.

The project was not ethically controversial: 97% of the ethical review committees approved the project without requiring changes or further information. The time delay was due to problems of coordination between the governance systems in the different countries.

Another challenge mentioned in the article is to make researchers, doctors and patients aware of the existence of biobanks for research on rare diseases, and the importance of contributing to these biobank networks by collecting samples and updating databases.

The trend to link biobanks in networks has been clear for a while, even independently of the research on rare diseases. But this research really highlights a key feature in today’s biobanking: its infrastructural nature. Research on rare diseases, needing data from patients spread across the world, can therefore also likely accelerate the development of biobanks as infrastructures for future research.

Pär Segerdahl

Part of international collaborations - the Ethics Blog

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