The Ethics Blog

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

Month: April 2015

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

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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

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Experts on assignment in the real world

14 April, 2015 / / 0 Comments

Pär SegerdahlExperts 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

We like broad perspectives : www.ethicsblog.crb.uu.se

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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

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