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

Month: January 2012

Australians want to biobank

Creating biobanks for future research is sometimes debated as if such investments seriously threatened sample donors’ integrity.

In Sweden, the Data Inspection Board even decided that it is against the law to collect biological samples and personal health data “for future research.” Participants cannot give their consent to anything that vague, they argued.

This distrustfulness may be out of touch with public perceptions, however, judging from a recent Australian study. The Australian researchers report “a high level of trust in university biobanks” and “a strong willingness to participate in biobank research.”

Don’t people know one cannot trust anything that vague?

Pär Segerdahl

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Protecting children: through research or from research?

Children pose a dizzyingly difficult problem for research ethics.

One of the most important tasks of research ethics is the protection of human research participants. This significant aim is realized above all through the requirement of proper information and consent procedures.

But children often cannot be protected though these means. They are too young to understand information about research and to give their own autonomous consent.

Children often are excluded from medical research. Since they cannot be protected by the standard ethical precautions, they can be protected only by being excluded from research, so to speak.

The result, however, is that “experimentation” on children in practice moves elsewhere. It moves to the prescription of medical substances to sick children in health care.

We often don’t know the side-effects of medical substances in children; at least not as well as we know them in adults. We often don’t know what dosages are required in children to gain the sought-after effect. We often don’t know when the dosages become toxic.

As a consequence of this, medical prescriptions to children lack the scientific evidence that we have for adult patients. Moreover, when children become sick, they may be “protected” as patients by being denied what could be the most effective medical treatment. Doctors cannot prescribe potent medical substances to children if they don’t know their effects in the body of a child.

The dizzying difficulty can perhaps be simplified thus:

  1. Adults can be ethically protected as research participants. Therefore, scientific knowledge is gained that protects them as patients too.
  2. We cannot protect children as research participants. Therefore, we cannot protect them as patients either (at least not as well as we protect adult patients)

There is growing concern among ethicists about this situation. More knowledge is needed about children’s responses to various medical treatments. Otherwise they cannot be given the best possible treatments when they are patients. That, however, requires more clinical research with children. – But how can we ethically justify such research?

The problem is discussed in the current issue of The American Journal of Bioethics. A target article by David Wendler is followed by seven open peer commentaries.

If you are interested in the problematic, I strongly recommend reading this discussion and considering whether the attempted justifications get to the root of the dizzying problem.  One thing is clear, though:

Protecting children ethically by excluding them from research participation is not the unambiguously good deed it may appear to be.

Pär Segerdahl

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Trapped in our humanity?

Being human, can I think nonhuman thoughts? Can the world I perceive be anything but a human world?

These philosophical questions arise when I read Cora Diamond’s and Bernard Williams’ humanistic portrayals of our relations to animals.

A certain form of “human self-centeredness” is often deemed unavoidable in philosophy. If I talk about a dog as being nervous, for example, I use language. But since this language is my language, and I am human, the dog’s “nervousness” would seem to have its ultimate reference point in my humanity.

When I try these thoughts, they make it look as if we, in some almost occult sense, were trapped in our humanity. The more we reach out toward other bodily beings, the more entrenched we become in our own spirituality. Language may open up an entire world for us. But since language is human, it makes us a solipsistic being that cannot but experience a fundamentally human world.

Believing in an “ineliminable white or male understanding of the world” would be prejudiced, Williams writes. But our humanity cannot, of course, be eliminated as if it were an old prejudice. Therefore: “A concern for nonhuman animals is indeed a proper part of human life, but we can acquire it, cultivate it, and teach it only in terms of our understanding of ourselves.”

Similar thoughts appear in Diamond’s notion that the kind of moral response to animals that can motivate vegetarianism (such as her own) is an “extension to animals of modes of thinking characteristic of our responses to human beings.”

Perhaps I misunderstand them. But the idea seems to be that we become human primarily with other humans, and only thereafter relate to a “nonhuman” world on the basis of the more primordial human one. Humanism, in such philosophical form, could be called: the idea of “humanistic immanence.”

What is valuable in the idea of humanistic immanence is what it has in common with all good philosophy: the self-critical occupation with our own thinking. What I find more questionable is what appears to be an unfounded assumption: that we become human primarily with other humans (a purification of what is human).

One does not have to be a “post-humanist” to make the following observation:

  • “… in the lives of many people animals occupy a place which is, in certain respects, as central as that occupied by other human beings. In particular, certain animals have a quite fundamental place in the lives of many young children; and a child’s use of the words ‘pain’, ‘fear’ and so on may be acquired as immediately in connection with the pet cat as in connection with human beings.” (David Cockburn)

Consider, in the light of this observation, Diamond’s important idea that, “we learn what a human being is in – among other ways – sitting at a table where WE eat THEM.” Take this notion of human becoming to ape language research, where apes and humans meet daily over food and have conversations that may concern such matters as what to eat, who eats what, and who eats with whom.

What happens when humans share food with apes, sitting down on the ground rather than around a dinner table? What happens to our “humanity” and to their “animality”? What happens to us as men and women when apes communicate attitudes to how humans of different sex and age should behave? What happens to our moral understanding when apes view some visitors as bad and urge their human friends to bite them?

My (human) notion of nervousness may in part have developed through interaction with our sensitive Great Dane when I was a child. What I learned through these interactions may only thereafter have been extended to human nervousness.

I am human and so is my language. But the manner in which I became human (and acquired language) transcends, I want to say, the purified human sphere of “humanistic immanence.”

My ineliminable humanity already is more than human. What are the consequences for philosophy?

Pär Segerdahl

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Can infrastructure for biobank research make ethical notions obsolete?

In a comment to what I posted earlier about the decision of the Swedish Data Inspection Board to stop LifeGene, Åke Thörn asks what I mean by saying that

  • “LifeGene represents a new reality in the making.”

Since the question has deep interest, I want to answer it here, in a new post. I will use a simile to explain my intended meaning.

Suppose that rather than discussing biobank ethics, we were playing a form of chess with the strange feature that the chessboard sometimes changes. Squares turn into circles. Or the entire chessboard turns into a rhomb.

These changes of the chessboard make the old rules obsolete. What is “straight” and what is “diagonal” on a chessboard with the shape of a rhomb? The rules need to be reconsidered!

Research ethics and ethical review can be compared to games played on chessboards that sometimes change and require that rules and basic notions are reconsidered. What I meant in my previous post was that LifeGene represents such a basic change of the research ethical chessboard.

How should the “aim” of biobank infrastructure be described, given that infrastructure is not a research project with the aims of individual biobank projects? Do people turn into “research participants” when their ten-year old blood samples are used in new studies?

We cannot always cherish old ethical notions – as if there were no such things as TIME and CHANGE. We sometimes need to rethink rules and basic notions.

I hope these considerations explain my understanding of ethics as sensitive to changing times, and my notion of LifeGene as a “new reality.”

Pär Segerdahl

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