Author: Pär Segerdahl (Page 28 of 43)

Idling normativity

17 August, 2015 / Pär Segerdahl / 0 Comments

I recently wrote about the tendency of ethical practices to lose their vital functions and degenerate into empty rituals. Why is there such a tendency?

The tendency is not unique to ethics: it is everywhere.

Suddenly, patients and students are to be called “customers” and be treated “as” customers. This can be perceived as an imposed language, as empty rituals that demean all concerned.

Since the edict to treat a variety of relationships “as” customer relationships can be experienced as demeaning, expanding customer normativity has become a problem even where it has its rightful place: in our stores, where we really are customers.

A retail chain – I will not say which – is now instructing their employees to call their customers “guests” and to treat them “as” guests!

The retail chain “solves” the problem of expanding customer normativity by decreeing guest normativity at precisely the place where customer normativity should work authentically.

I don’t know why we so easily go astray in our own forms of normativity, but I have a name for the phenomenon: idling normativity.

Pär Segerdahl

Openness as an ethical ritual

3 August, 2015 / Pär Segerdahl / 0 Comments

Barbara A. Koenig wrote last year about how informed consent has acquired a “liturgical feel” in biomedical research ethics. Each time the protection of research participants is challenged by new forms of research, the answer is: more consent!

The procedure of informing and asking for consent may feel like assuming a priestly guise and performing an ethical ritual with the research participant.

The ritual is moreover sometimes practically impossible to implement. For example, if one is to inform participants in genetic research about incidental findings that might be made about them, so that they can decide whether they want to be re-contacted if researchers happen to discover “something” about them.

If it takes one hour to inform a patient about his or her actual genetic disease, how long would it take to inform a research participant of all possible kinds of genetic disease risks that might be discovered? Sorry, not just one participant, but hundreds of thousands.

How then can research participants be respected as humans, if informed consent has become like an empty ritual with the poor participant? (A ritual that in genetic research sometimes is impracticable.)

In the August issue of Nature, Misha Angrist suggests a solution: we treat participants as partners in the research process, by being open to them. How are we open to them? By offering them the researchers’ genetic raw data, which can be handed over to them as an electronic file.

Here we are not talking about interpreted genetic disease risks, but of heaps of genetic raw data that are utterly meaningless for research participants.

Openness often has important functions. Making scientific articles openly accessible so that everyone can read them has a function. Making researchers’ data available to other researchers so that they can critically review research, or use already collected data in new research, has a function.

But offering files with genetic raw data to research participants, what is its function? Is it really the beginning of a beautiful partnership?

Openness and partnership seem here to become yet another ethical ritual; yet another universal solution to ethical difficulties.

Pär Segerdahl

When writing becomes investigating

13 July, 2015 / Pär Segerdahl / 0 Comments

We write for many reasons. To remember, to instruct, to tell, to amuse…

Sometimes we write to investigate. Investigate what? Of course, something that we don’t really understand and therefore wonder about.

Writing is also a prestigious linguistic medium. Printed products (books and articles) often express the opposite of incomprehension and wonder. This is not surprising, since the printed product is the end result of long work.

This creates problems for the investigating beginner. One of the difficulties of writing about difficult things is to dare express your lack of understanding. You have to put your finger (or pen tip, or keys) precisely on your incomprehension.

Instead, one tends to quickly write up an impressive facade that hides one’s incomprehension. One mimics the style of the finished printed matter. One then starts at the wrong end. One starts at the end.

If you just slow down and ask yourself: What do I really understand here? What don’t I understand? And then honestly write it down – in the form of questions – you soon begin to write in a way that explores what needs to be clarified.

The moment your writing makes contact with your incomprehension, the writing becomes explorative. It will also come alive, because you don’t write as if you already were finished with everything. You make discoveries and you change during the work.

I would liken it to daring to ski down the slopes for the first time and dare to trust that you can turn back and forth so as to maintain a speed that you yourself can keep up with.

The equivalent of “turning back and forth” are the questions you regularly ask based on your incomprehension. Without the questions, you soon rush downhill and risk breaking your neck.

To write in an explorative way is to think. Therefore, philosophy doesn’t resemble a profession, because here it is your lack of competence that drives the work.

Pär Segerdahl

Our publications on neuroethics and philosophy of the brain

30 June, 2015 / Pär Segerdahl / 0 Comments

At CRB, an international, multidisciplinary research group works with ethical and philosophical questions that are associated with the neuroscientific exploration of the human mind and brain.

As part of the European Human Brain Project, they approach not only ethical questions that arise, or may arise, with the development and practical application of neuroscience. They also more fundamentally explore philosophical questions about, for example, the concepts of consciousness, human identity, and the self.

In order to give an overview of their extensive work, we recently compiled a report of their articles, books and book chapters. It is available online:

Neuroethics & Philosophy of the Brain

The report also contains abstracts of all the publications. – Have a look at the compilation; I’m sure you will find it fascinating!

I might add that we recently updated similar reports on our work in biobank ethics and in nursing ethics:

Here too you’ll find abstracts of our interesting publications in these fields.

Pär Segerdahl

Laboratories interpret genetic test results differently

15 June, 2015 / Pär Segerdahl / 0 Comments

A new study suggests that the results of genetic tests are not always as reliable as we want to believe. A comparison between laboratories providing these tests shows that the same genetic variant can be interpreted differently.

A single gene variant can thus be interpreted as an increased risk of breast cancer by one laboratory, but as no increased risk by another.

Given that the results of genetic tests can motivate a person to undergo, or not undergo, preventive surgery, this is quite alarming.

Genetic risks are not literally written in our genes. They require interpreting the significance of different genetic variants. The interpretation requires research that can show whether the variant is associated with increased risk of disease or not.

Most variants cannot be interpreted at all. Many are so rare that there is no data to even begin interpreting their meaning.

If I understand correctly, interpretations differ partly because laboratories do not always share their data. Their interpretations are based on limited studies using their own data. Such studies may point in different directions.

In addition to emphasizing the importance of open data, all this shows that we cannot take genetic tests or effective healthcare for granted. They require ongoing research work with large amounts of data.

We easily neglect this: how research continuously underpins healthcare.

But even with better interpretations of genetic tests, it will be difficult to interpret what the results mean for the individual.

Genetic risk continues to be a complex concept.

Pär Segerdahl

All you need is law? The ethics of legal scholarship (By Moa Kindström Dahlin)

9 June, 2015 / Pär Segerdahl / 0 Comments

Working as a lawyer in a multidisciplinary centre for research ethics and bioethics, as I do, often brings up to date questions regarding the relationship between law and ethics. What kind of ethical competence does academic lawyers need, and what kind of ethical challenges do we face? I will try to address some aspects of these challenges.

First, I must confess. I am a believer, a believer of law.

That does not mean that I automatically like all regulations, it is just that I cannot see a better way to run the world, but through a common system of legal norms. Believing in law means that I accept living in a different universe. I know the non-lawyers cannot always see my universe, but I see it clearly, and I believe in it. You’ll have to trust me – and all other lawyers – through training and education, we see this parallel universe and believe in it.

I do not always like what I see, but I do accept that it exists.

I think that understanding a lawyer’s understanding of what law is, is a necessary precondition for going deeper into the understanding of what I here refer to as the ethics of legal scholarship. So, what is law? This question has a thousand answers, stemming from different philosophical theories, but I choose to put it like this:

Law is an idea as well as a practical reality and a practice.

As a reality, law is the sum of all regulation, locally (e.g. Sweden), regionally (e.g. Europe) and internationally. For example, the statutes, the preparatory works, court decisions, the academic legal literature, the general legal principles and other legal sources where we find the answers to questions such as “Is it legal to do this or that?” or “Might I be responsible for this specific act in some way?”

The practice of law has to do with the application of general legal knowledge (whatever that means) to a specific case, and this application always involves interpretation. This means that law is contextual. The result of its application differs depending on situation, time and place.

Law as an idea is the illusion that there are legal answers out there somewhere, ready to be discovered, described and applied. Lawyers live in a universe where this illusion is accepted, although every lawyer knows that this is oversimplified. There is rarely an obvious answer to a posed question, and there are often several different interpretations that can be made.

The legal universe is a universe of planets and orbits: different legal sources and jurisdictions, different legal traditions and ideas on how to interpret legal sources. There are numerous legal theories, perspectives and ideologies: legal positivism, critical legal studies, law and economics and therapeutic jurisprudence to name a few. The way we, the lawyers, choose to look at the law – the lens of our telescope if you like – affects how we perceive and decipher what we see.

Law is sometimes described as codified ethics. The legal system of a state often provides structures and systems for new technologies and medical progress. Therefore, law plays an important role when analyzing a state’s political system or the organization of its welfare system.

Law, in short, is a significant piece of a puzzle in the world as we know it.

This means that the idea of law as something concrete, something we can discover and describe, creates our perception of reality. Yet, we must be aware of the fact that the law itself is intangible, and answers to legal questions might differ, depending on whom (which lawyer) is making the analysis and which lens is being used.

Sometimes the answer is clear and precise, but many times the answer is vague and blurry. When the law seems unclear, it is up to us, the lawyers, to heal it.

We cannot accept “legal gaps”.

The very idea that law is a system that provides all the answers means that we must try to find all the answers within the system. If we cannot find them, we have to create them. Therefore, proposing and creating legal answers is one of the tasks for legal scholars. With this task comes great power. If a lawyer states that something is a description of what law is, such a description may be used as an argument for a political development in that direction.

Therefore the descriptions of what law is and what is legal within a field – especially if the regulation in the field is new or under revision – must always be nuanced and clearly motivated. If the statement as to what law is emanates from certain starting points, this should be clarified in order to make the reasoning transparent.

This is what I would like to call the ethics of legal scholarship.

It is worth repeating: Research within legal scholarship always requires thoughtfulness. We, the scholars, have to be careful and ethically aware all the time. Our answers and statements as to legal answers are always normative, never just descriptive. Every time an academic lawyer answers a question, the answer or statement might itself become a legal source and be referred to as a part of the law.

Law is constantly reconstructing itself and is, to some extent, self-sufficient. But if law is law, does that mean that all you need is law?

Moa Kindström Dahlin

Second issue of our newsletter about biobanks

2 June, 2015 / Pär Segerdahl / 0 Comments

Now you can read the second newsletter this year from CRB and BBMRI.se:

Biobank perspectives: current issues in biobank ethics and law

The newsletter contains four news items:

1. Anna-Sara Lind presents a new book, Information and Law in Transition, and the contributions to the book by CRB researchers.

2. Anna-Sara Lind describes the situation for the temporary Swedish law on research registries.

3. Mats G. Hansson reports on a modified version of broad consent for future research.

4. Josepine Fernow presents a new article by Jennifer Viberg on the proposal to give research participants freedom of choice about incidental findings.

(Link to PDF version of the newsletter)

Pär Segerdahl

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

28 April, 2015 / Pär Segerdahl / 0 Comments

Since 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

Teaching the child the concept of what it learns

21 April, 2015 / Pär Segerdahl / 0 Comments

It 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:

Calibrating the child for language

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

Experts on assignment in the real world

14 April, 2015 / Pär Segerdahl / 0 Comments

Experts on assignment in the real world cease in part to be experts. Just consider computer experts who create a computer system for the tax authorities, or for a bank, or for a hospital.

In order for these systems to work on location, the computer experts need to be open to what they don’t know much about: the unique activities at the tax authorities, or at the bank, or at the hospital.

Computer experts who aren’t open to their non-expertise on the site where they are on assignment perform worse as experts and will deliver inferior systems.

Experts can therefore not in practice be only experts. If one exaggerates one’s role as an expert, one fails on assignment in the real world.

This should apply also to other forms of expertise. My guess is that legal experts almost always find themselves in this precarious situation of being experts in a reality that constantly forces them to open themselves to their non-expertise. In fact, law appears to be an occupation that to an unusually high degree develops this openness systematically. I admire how legal experts constantly learn about the multifarious realities they act in.

Jurists should be a role model for computer experts and economic experts: because they methodically manage their inevitable non-expertise.

This post indicates the spirit in which I (as legal non-expert) took the liberty to question the Swedish Data Inspection Board’s shutting down of LifeGene and more recent rejection of a proposed law on research databases.

Can one be an expert “purely” on data protection? I think not. My impression is that the Data Inspection Board, on assignment in the world of research, didn’t open itself to its non-expertise in this reality. They acted (it seems to me) as if data protection issues could be handled as a separate field of expertise, without carefully considering the unique conditions of contemporary research and the kinds of aims that research initiatives can have.

Perhaps the temptation resides in the Board’s role as a public body: as an authority with a seemingly “pure” mission.

Pär Segerdahl

Author: Pär Segerdahl (Page 28 of 43)

Idling normativity

When writing becomes investigating

Our publications on neuroethics and philosophy of the brain

All you need is law? The ethics of legal scholarship (By Moa Kindström Dahlin)

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

Teaching the child the concept of what it learns

Experts on assignment in the real world

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