I want to contribute to research, not subscribe to genetic information

May 31, 2012

What do researchers owe participants in biobank research?

One answer is that researchers should share relevant incidental findings about participants with these helpful individuals. Returning such information could support a sense of partnership and acknowledge participants’ extremely valuable contribution to research.

I’m doubtful about this answer, however. I’m inclined to think that return of information might estrange participants from the research to which they want to contribute.

Certainly, if researchers discover a tumor but don’t identify and contact the participant, that would be problematic. But incidental findings in biobank research typically concern difficult to interpret genetic risk factors. Should these elusive figures be communicated to participants?

Samples may moreover be reused many times in different biobank projects. A relevant incidental finding about me may not be made until a decade after I gave the sample. By then I may have forgotten that I gave it.

Do I want to be seen as a biobank partner that long after I gave the sample? Do I want my contribution to research to be acknowledged years afterwards in the form of percentages concerning increased disease risks? Wasn’t it sufficient with the attention and the health information that I received when I gave the sample: when I actually MADE my contribution?

Personally, I’m willing to contribute to research by giving blood samples, answering questions, and undergoing health examinations. But if that means also getting a lifelong subscription to genetic information about me, I’m beginning to hesitate.

That’s not what I wanted, when I wanted to contribute to research.

Realizing that my blood sample rendered a lifelong subscription to genetic information would estrange me from what I thought I was doing. Can’t one simply contribute to research?

But other participants might want the information. Should biobank research then offer them subscription services?

Pär Segerdahl

We like challenging questions - the ethics blog


Do I have a self?

May 25, 2012

Viewing neuroscience as a box opener is tempting. The box conceals the human mind; opening the box reveals it.

According to this image, neuroscience uncovers reality. It lays bare the truth about our taken for granted notions of mind: about our concepts of ‘self,’ ‘will,’ ‘belief,’ ‘intention’… Neuroscience reveals the underlying facts about us humans.

How exciting…, and how terrifying! What will they find in the box? And what will they not find? Will they find my ‘self’ there – the entity that is me and that writes these words?

What if they don’t find my ‘self’ in the box! What if my ‘self’ turns out to be an illusion! Can they engineer one for me instead? My life would be so desolate without ‘me.’

But neuroscientists are clever. They control what’s in the box. They surely will be able to enhance my brain and create the ‘self’ that didn’t exist in the first place.

Ideas like these are discussed in a mind-boggling interview entitled,

What strikes me about the neurophilosophical discussion is that it does NOT question the notion of the self. The notion is discussed as if it were self-evident to all of us, as some sort of ‘entity.’ The notion is supposed to be present in ordinary (culturally shaped) self-understanding. What is lacking is the evidence for the notion of ‘the self.’

You’ve guessed where the evidence is hiding: it’s in the box!

Neuroscientists opening the box threaten to disclose that the brain is naked. It might not be garmented in a ‘self’ or in a ‘free will.’ That these ‘entities’ exist in the box were perhaps just illicit reifications of modes of speech present in everyday discourse.

But what is ‘reification’?

Is it not precisely the image of ‘the box’ concealing the realities of mind?

If the tempting ‘box’ image supplies the model of reification – the very form of reification – isn’t the notion that neuroscience, by opening the box, is exposing reifications in ordinary discourse a whirling dance with the same reifying tendency that it is supposed to expose?

The ‘box’ mode of thinking is a simplified use of psychological nouns and verbs as if they referred to ‘entities’ and ‘processes’ in a hidden realm. It is difficult to resist such simplified linguistic imagery.

I’m convinced that neuroscience is making important discoveries that will challenge our self-understanding. But I question the ‘box’ image of these developments as an oversimplification of the very modes of speech it makes it seem we can transcend.

Pär Segerdahl

Minding our language - the Ethics Blog


Can neuroscience modernize human self-understanding?

May 17, 2012

Tearing down old buildings and erecting new ones on the basis of modern science and technology – we are constantly doing it in our cities. But can similar ambitions to get rid of the old, to modernize, be realized even more thoroughly, with regard to us and the human condition?

Can we tear down “traditional” human self-understanding – the language we use when we reflect on life in literature, in philosophy, and in the humanities – and replace it by new neuroscientific terms?

Earlier this spring, the philosopher Roger Scruton published an essay in the Spectator where he eloquently attacks claims that neuroscience can and should replace the humanities by a set of brave new “neuro”-disciplines, like neuroethics, neuroaesthetics, and neuromusicology.

Not only will these purported new “sciences” fail to create the understanding that traditional ethics, aesthetics, and musicology, helped us towards (for example, of Bach’s music). They will even fail to achieve the scientific explanations that would justify the brave new “neuro”-prefix.

In order for there to be explanations at all, there must first of all be questions. What characterizes the purported “neuro”-sciences, however, is their lack of questions, Scruton remarks.

“Neuro-explanation” typically is no more than translation into neuro-jargon. The aim is neither understanding nor explanation, but the ideological one of replacing the traditional by the new, at any cost.

The result of these extreme modernization ambitions running amok in human self-understanding, Scruton claims, and I agree with him, is nonsense: neurononsense.

Yet, something worries me in Scruton’s essay. He almost seems to purify human self-understanding, or the human condition, as if it were a higher sphere that should not be affected by changing times, at least not if they are modern.

I agree that neuroscience cannot explain the human condition. I agree that it cannot replace human self-understanding. But it can change the human condition and challenge our self-understanding. It already does.

Science and technology cannot be abstracted from the human condition. We are continually becoming “modernized” by, for example, neuroscientific developments. These changing conditions are real, and not merely nonsense or jargon. They occur everywhere, not merely among intellectuals or academics. And they reach all the way to our language.

Neuroscience certainly cannot replace the humanities. But it can challenge the humanities to reflect on changed human conditions.

When attempts in the human sciences to understand modern human conditions focus on neuroscience, the prefix “neuro-” could denote a more responsible form of intellectual work than the one Scruton rightly criticizes. It could denote work that feels the challenge of neuroscientific developments and takes it seriously.

Here at CRB, Kathinka Evers works to develop such a responsible form of neuroethics: one that does not translate ethics into neuro-jargon, but sees neuroscientific findings about the brain as a philosophical challenge to understand and clarify, very often in opposition to the temptation of jargon.

Pär Segerdahl

Approaching future issues - the Ethics Blog


Research before health care

May 10, 2012

Last week I blogged about the unique status that personal data have in science. Researchers are not interested in the persons behind the data and they have no intention of returning to them; an intention that most other personal data collectors have.

In an age of increasing integrity threats, it is uplifting that biobanks and research registers function like depersonalized scientific spaces where our data can orbit between research projects without tendency to return to us and disturb us.

Scientific aims disentangle us from our data.

Simultaneously with my blogging on this topic, Mats G. Hansson here at CRB wrote a letter to Nature on almost the same subject.

Nature recently reported on recommendations to US biobanks to inform participants about medically relevant incidental findings about their DNA. Mats G. Hansson warns that following such recommendations would be irresponsible.

Genetic risk information is highly complex. It is often unclear what the discovery of a particular genotype variant actually says about an individual’s disease risk. And even if increased disease risk can be proven, further research is needed to ascertain which preventive measures would be efficient.

Research must be allowed run ahead of attempts to provide (what looks like) health care services. Reporting incidental findings that have not been validated “could be putting the cart before the horse,” Hansson warns.

Making sure that biobank research runs ahead of (what looks like) health care services has one further function. It sustains the depersonalized status of personal data in research.

I believe this is important when data protection legislation is about to be sharpened to meet new perceived integrity threats. Research might be unduly affected by the new legislation, especially if the unique status of personal data in research is not clear.

When authorities share personal data, the aim typically is to be able to return to individuals with these data – perhaps in court. It is in the nature of scientific data sharing, however, that the individuals behind the data are uninteresting and are not included in the purpose of the data sharing.

Biobank infrastructure is very much about facilitating scientific data sharing. If these infrastructures are well-built, they can serve as reassuring examples in times where integrity threats are assumed to hide behind every corner.

People could then say: “There actually are depersonalized spaces where personal data can circulate safely without burdening the persons behind the data. They are called biobanks.”

Pär Segerdahl

We participate in debates - the Ethics Blog


Research with my data, but not about me

May 3, 2012

It is perplexing how the websites of large internet companies continuously adapt to me. It looks like the entire business activity of Amazon was about the musical artists I listened to yesterday.

These companies evidently collect data about what I search out on their websites and automatically adapt to my computer, making the presentation of products as attractive as possible to me.

It is rather annoying to get one’s own internet history in the face like that.

The example illustrates a common property of personal data. When data about me are collected, the data sooner or later return to me: in the form of an adapted website; in the form of a demand to pay tax arrears; or in the form of more expensive insurance premiums.

No one would bother to collect my data if they did not intend to return to me on the basis of the data.

Me, me, me: my data are about me. Sooner or later they come back to me.

There is, however, one brilliant exception from my data’s stubborn tendency to return to me: research. When researchers collect my blood sample or ask questions about my health, they are not interested in my person. My data will not return to me in any form.

Researchers are interested in general patterns that can be discerned in data from thousands of people. If researchers should return to participants, it is to collect further data that (for example) can make the patterns of ageing appear.

Patterns, patterns, patterns: research is about patterns. It is not about any one of us who supplied the data.

I’m therefore inclined to see research registers as categorically distinct from the tax authorities’ data about my incomes. Researchers launch my data up into a depersonalized scientific space. Up there, my data hover weightlessly and my person cannot attract them back to me. They do research with my data. But it is not about me.

I don’t primarily have in mind the fact that researchers code my data so that the connection to me is obscured. I’m thinking of the elementary fact that they collect my data without any intention of returning to me on the basis of the data.

When the integrity of research participants is debated, it is important to keep this unique status of research registers in mind. The purpose of collecting scientific data about me is not at all about me. The purpose “scientific research” disentangles me from my own data.

Biobank research here encounters a difficulty.

Suppose that researchers discover in my blood sample a genetic disposition for a disease that can be prevented if measures are taken in advance. Should they then take down my data from their depersonalized orbit in scientific space, and inform me about the disposition?

It may seem obvious that they should inform me. But it would simultaneously be a departure from how science typically treats personal data without intention of returning to participants on the basis of the data.

How should biobank researchers handle discoveries about individual participants that may save their future health? This important and difficult question will be investigated in the dissertation work of our most recent doctoral student at CRB, Jennifer Viberg.

I’m certain that the Ethics Blog will return many times to Jennifer’s work on incidental findings in biobank research.

Pär Segerdahl

We like challenging questions - the ethics blog


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