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

Year: 2013 (Page 3 of 5)

HandsOn: Biobanks 2013

The interactive conference, HandsOn: Biobanks, organized for the first time in Uppsala last year, attracted participants from 27 countries. The “movie version” of the event can be viewed on BBMRI.se.

This stimulating interactive concept will be repeated on 21-22 November 2013, in The Hague.

HandsOn: Biobanks focuses this year on the interaction between disciplines, and on questions like (quoting from the website):

  • “How to deal with issues that evolve from the connections with other disciplines? How do we strengthen and optimize these connections, so all communities will benefit?”

For information about the program and registration, visit HandsOn: Biobanks 2013.

Early bird registration is open!

Pär Segerdahl

We recommend conferences - the ethics blog

An ape genius, or just an ordinary talking ape?

In 2001 I travelled to Atlanta, where Sue Savage-Rumbaugh then worked with the language-competent bonobos Kanzi and Panbanisha. A question I travelled with concerned the linguistic tests that I had seen in a TV-documentary, Kanzi, an ape of genius.

In these tests, the ape responds to requests in spoken English, uttered by an experimenter who – to avoid cueing Kanzi through extra-linguistic assists like gestures and gazes – stands behind his back, or sits in an adjacent room speaking through a microphone, or covers her face with a welder’s mask. The aim of this experimental design is to distill Kanzi’s comprehension of vocabulary and syntax, the essence of language.

What I wondered was this: how did the experimenters get the ape into the test situation?

In the documentary, Kanzi appears miraculously as if he were nothing but a brilliant subject of scientific experimentation, an ape genius. Sitting on a chair wearing headphones, he picks up photos of grapes, keys, potatoes, people… He responds perfectly reliably, hearing the verbal requests, “Kanzi, give Sue the picture of grapes,” and so on.

How did Kanzi become that brilliant research subject? What happened before the camera was turned on? Does Kanzi spend his days on a chair wearing headphones, just waiting for an experimenter? Probably not, but then what is the relation between his ordinary life and the test situation? Is it irrelevant, since the conditioning anyhow took place in the same kind of scientific situation?

My first question to William M. Fields, who invited me to Atlanta, was: How do you get Kanzi into the experiment? The simplicity of his answer stunned me:

  • “We ask Kanzi if he wants to work.”

In contrast to his half-sister, Panbanisha, who typically refused to play the research subject role, Kanzi usually is willing to work. Then follows negotiations about the food he will have access to during work and which activities and meetings he’ll be granted later because he admits to work.

The filmed tests have a context, but the context isn’t more science. It is Kanzi’s life with other bonobos and with the speaking humans who co-reared young bonobos together with their bonobo mothers. Kanzi is an adult, but a point can be made by comparing him with children who participate in controlled psychological experiments. These children are not raised in a lab. They have a home. Only occasionally are they taken into the lab to participate in science. This often requires quite a bit of negotiation and instruction.

Child participation in psychological experimentation exhibits home/lab duality. The child’s language develops at home and is only tested in the lab. The science that charts the child’s linguistic development doesn’t reflect the more significant context outside of the lab, where the child becomes the speaking being that is being tested.

The child’s life at home is primal. Science plays the second fiddle and doesn’t recreate the vitality that made what is scientifically tested possible.

Animal science rarely exhibits home/lab duality. The animals are conditioned in the same type of controlled situations as those in which they are tested. If an animal picks up laminated photos of keys, it is because it was trained to pick up laminated photos of keys. It doesn’t have a life with doors, cabinets and keys, independently of its scientific disciplining. But Kanzi does.

Like a child whose parents decided to contribute to psychological science, Kanzi is not disciplined as a pure research subject. He became a speaking being at home, in ordinary ape-human ways of life (in an ape-human culture). Only occasionally is he talked and instructed into the lab, to participate in activities that don’t reflect the vibrant home situations in which he became who he is.

Kanzi is no aberrant ape genius. He is just an ordinary talking ape. Home/lab duality enabled him to become one.

(Want to read more? Here are some books.)

Pär Segerdahl

Understanding enculturated apes - the ethics blog

Standing up speaking, sitting down thinking

Intellectual life overflows with regulated forms of discourse about all kinds of urgent matters. Sometimes they are called schools of thought; sometimes theories; sometimes ideologies or positions.

Philosophy could be viewed as the originator of the most prestigious and fundamental discourses about life, like

  • idealism
  • materialism
  • pragmatism
  • existentialism
  • structuralism
  • post-structuralism.

Although this to some extent is historically correct, such a view of philosophy stands in stark contrast to Socrates’ difficulties with speaking and acting publically. His inner voice, his daemon, caused him to hesitate and instead examine himself and his relation to such forms of discourse.

I can imagine Socrates suddenly pausing, torturing himself with questions like

  • why do I want to speak in this way?
  • couldn’t one say the opposite as well?
  • what led me to hold this view?
  • is this merely something I’ve learned to repeat, as a lesson learnt by heart?
  • am I wise, or do I only pretend I am?

My aim here is to draw attention to philosophy as engagement with the latter, self-examining questions. The importance of being sensitive to such questions derives from the fact that intellectual life resembles a marketplace for the former kinds of regulated discourse. Competing schools fight for dominance and accuse each other for neglecting the most decisive aspect of whatever is under discussion.

I want to highlight the importance of somtimes attacking oneself instead; the significance of asking if one is (perhaps) unjust, exaggerating… unwise.

Pursuing the latter questions, we as it were parenthesize our normal obedience to the rules of discourse and examine the extent to which we honestly can abide by them.

– But wouldn’t such questioning of oneself presuppose a discourse of pure self-examination within which the truth finally can be grounded – a discourse that, if it existed, immediately would achieve absolute dominance on the intellectual market?

The marketplace of ideas is attractive. It is the place where we can stand up, speak publically and influence the direction of the world (and achieve reputation). Not surprisingly, philosophers found it difficult to avoid presenting their self-examinations, especially if they found them successful, as being if not truth itself, then at least the right path to truth: as the the discourse that almost guarantees honesty!

To me, these temptations and pitfalls make it all the more important to emphasize the latter list of actually rather simple questions, by which any person can be haunted. Discourse that never is interrupted by pangs of intellectual conscience and consequent self-examinations soon runs amok.

Sometimes, one must sit down and think. Thinking in this sense is not a (silent) form of discourse. But we always compare it with one, and thus we constantly misunderstand philosophy as if it were the purest and most prestigious form of discourse.

Pär Segerdahl

The Ethics Blog - Thinking about thinking

Vaccine prioritization and the new Japanese pandemic law (by Yusuke Inoue)

Yusuke InoueFor many years, balancing individual human rights against social benefits has been the standard theme for public health ethics. Here I would like to update you on a recent discussion in Japan.

Last month a new law was introduced in Japan. Originally the enactment was planned later, but it was speeded up because of the recent series of death cases from emerging bird flu in neighboring Asian countries. This new law is entitled,

  • Act in response to new flu strains and other diseases

Unlike existing laws, such as the Immunization Act and the Act on Infectious Diseases, this new law is clearly intended to empower national and areal authorities to take substantial action. For example, in order to,

  • “prevent the spread of a disease,”
  • “protect a citizen’s rights or health,” or
  • “avoid social and economic confusion,”

these authorities can close public spaces or meetings, take special actions to sustain infrastructures, and direct medical staff to treat patients. This law was mainly drafted by bureaucrats and passed lacking sufficient explanation and public debate on the draft.

Based on the act, a national plan for prioritizing vaccine has become a matter of discussion. There are more than one hundred million people living in Japan, and securing vaccine for them quickly has been regarded as difficult. Therefore, this topic can be understood as a matter of distributive justice, and various methods for achieving justice have been discussed.

According to the recent draft plan, medical and caring staff, public officers, and manpower to sustain infrastructure are included in the prioritized class. It is not surprising that the longer the discussion goes on, the more people insist that they should be included in this class. For example, food industry workers are also suggested to be added to the class. Until now the targeted population has already reached more than 20 million! There was a similar discussion during the A/H1N1 swine flu “pandemic” in 2009, and many groups argued that they should have priority getting immunized.

Discussion on vaccine allocation is not unique to Japan. Until now, various ways of rationing, such as utility-based or justice-based allocation, have been suggested, as recently summarized by Buccieri and Gaetz in Public Health Ethics.

The nature of virus complicates the problem. It is difficult to know the nature of each flu virus just after outbreak of the pandemic. At least we can say that the scientific validity of a vaccine rationing plan should be continually tested, and flexible and practical interpretation will be needed. Furthermore, whichever principle for rationing we chose, the principle has to be shared and understood by the society in order to be effective in a real situation. On this point, today’s planning concerning the “prioritized class” in Japan needs further transparency about the evidence of setting the class – for rational policy making.

I also consider that cooperation between northern and southern countries should be more in focus. We remember concerns shown by some southern countries that pandemic vaccine was mainly occupied by the developed countries, and it was difficult for them to secure vaccine for their own citizens. Some emerging flu viruses lead to fatal conditions in developing countries, but do not have so serious consequences in developed countries. Nevertheless, vaccine allocation has been independently coped with by many countries.

Considering the global context of pandemic flu, I think that rationing vaccine as a domestic matter cannot be morally justified from the “justice” or “utility” point of view.

We are not sure that a pandemic will come or what will it be like. Fickle viruses haunt our thinking and test core value of our civilized society and the way of justice.

Yusuke Inoue

We want to be just - the Ethics Blog

Conference on global aspects of reproductive technology and surrogacy

Reproductive technology and surrogacy often is a cross-border practice that raises several ethical issues concerning the rights not only of adult participants but also of the children involved.

Do the children have a right to know about their genetic parents and do they have a right to be recognized by the countries of their contractual parents? What are the rights of surrogate mothers?

These and related questions will be discussed at an upcoming conference,

organized by The Nordic Committee on Bioethics.

Participation is free of charge. Young researchers (mainly PhD students) are invited to submit an abstract no later than May 20.

More information about abstracts, programme and registration can be found on the website of the Nordic Committee on Bioethics.

If you want to participate, register no later than August 15.

Pär Segerdahl

We recommend conferences - the ethics blog

The debate about after-birth abortion continues

Last year the Journal of Medical Ethics published an article by two philosophers claiming that the same arguments that support abortion also support abortion of newborns.

The article provoked strong reactions and I too felt I had to comment on the article here on The Ethics Blog.

What’s so provocative? I’m not so sure it is the conclusion that if we allow abortion we also should allow abortion of newborns. The two philosophers actually never concluded with any practical recommendations. They only wanted to theoretically explore the logic in the arguments for abortion.

And maybe this is what’s so provocative, or rather tragi-comical: the spirit in which one approaches questions of life and death as an entrepreneur might use the annual report to consider his reasons for terminating a project that can become a burden for the company.

Recently, the same journal reissued the article; this time with two editorials and a number of comments by ethicists (here).

The reissuing of the article reaffirms the attitude that the burning hot questions of life and death should be discussed as a rational entrepreneur manages his firm.

Should we allow infanticide? We’ll have to postpone decision until we’ve received the annual report from the neuroscientists on neonates’ capacity for thought.

Pär Segerdahl

We follow debates : The Ethics Blog

Revised European data protection will make data about rare diseases even rarer

EU is currently discussing changes to the European privacy laws. The intention is to strengthen the protection of privacy and to give people more control over their data.

The problem, which I highlighted on The Ethics Blog, is that the new proposal applies also to research. Presently there is an exception for scientific research about health and disease. The proposed revision of the privacy regulation, however, allows no exceptions.

Every person who has given data to a register must according to the new proposal be asked for consent each time researchers want to study some new disease pattern. Patient data can never be used in research without specific consent, and not even historical registers and data from diseased persons are given exception in the new proposal.

A recent article in Nature Reviews Genetics by Deborah Mascalzoni et al. highlights a patient group that is especially vulnerable to the proposed revision: patients suffering from rare diseases. In Sweden a disease is defined as rare if it affects less than a hundred persons in a million.

Data on rare diseases are, as a matter of course, rare. We therefore know little about these diseases and it is difficult to develop effective medical treatments. To achieve statistically significant analyses, researchers must typically share data over national borders. Every lost piece of data about rare diseases can mean dramatically impaired prospects of new drugs and treatments for these patient groups.

Rare diseases are thus a further strong reason for maintaining the current exception for scientific research in the data protection legislation. Read more on the CRB website.

Pär Segerdahl

Approaching future issues - the Ethics Blog

Unhappy approach behind policy for incidental findings

Should individual research participants be informed if biobank researchers incidentally discover increased genetic disease risks through analysis of their samples?

At a seminar, Jennifer Viberg recently discussed a well-known recommendation for when participants should be informed about incidental findings:

During the seminar it became increasingly clear how the authors of the recommendation were proceeding. They started out from how one already handles incidental findings in a more familiar field, namely, imaging studies of the internal organs of the human body. They then generalized that policy to the less familiar case of genomic biobank research.

When researchers produce images of the internal organs of the human body they may accidentally discover, for example, tumors in individual research participants. It is obvious that participants should be contacted about such findings so that action can be taken.

The problem when one generalizes from a field with developed policy to a less familiar field, however, is the risk that false analogies govern the generalized policy. By treating imaging studies as paradigm case of individual findings, it might look as if biobank researchers produce images; images of the genome that incidentally reveal individual divergences against which action can be taken – like when a tumor is operated.

The article does not emphasize the fact that incidental findings in biobank research more typically would concern highly complex and difficult to interpret information about increased individual genetic disease risks.

If I have a tumor, it exists within my body and it can be surgically removed. But if I have an increased genetic disease risk, what do I have and in what sense can it be removed? Does “actionability” have the same meaning for diseases and for increased disease risks?

These and related questions about differences are not emphasized in the article. On the contrary, one seems to be in a hurry to generalize a familiar routine to a new field.

Transferring lessons from familiar to less familiar fields seems reasonable. If one neglects the one-way nature of the approach, however, it easily inflicts blindness to essential differences. In her dissertation work, Jennifer Viberg wants to avoid this pitfall.

Pär Segerdahl

We challenge habits of thought : the Ethics Blog

Morality as a problem

Friedrich Nietzsche made this enigmatic remark about moral philosophy:

  • “In all ‘science of morals’ so far one thing was lacking, strange as it may sound: the problem of morality itself; what was lacking was any suspicion that there was something problematic here.”

What did Nietzsche mean? He seems to have been thinking of a very human tendency, namely, that of assuming that we already know what morality demands, at least roughly. The tendency, then, is to treat morality as given. Every sane person knows it intuitively!

The task of moral philosophy, identified on the basis of this tendency, becomes the following: dig deep enough to find the ultimate foundation of morality; or, fly high enough to catch sight of the ultimate moral principles.

How could Nietzsche view this daring work of digging and flying as being naïve to morality as a problem? People generally don’t ask these ultimate questions about morality. They don’t venture uncertain digging and flying expeditions. Asking the ultimate questions about morality seems anything but naïve.

Although daring on the assumption that morality is given, these ethical expeditions come too late, Nietzsche suggests. If we had been digging and flying a little bit earlier in the research process, we would have discovered that morality isn’t given:

  • “Just because our moral philosophers… were poorly informed and not even very curious about different peoples, times, and past ages – they never laid eyes on the real problems of morality; for these emerge only when we compare many moralities.”

We don’t live in a lukewarm condition of moral unity and certainty. There are different forms of moral sensitivity and we occasionally experience crises of uncertainty. We change our firmest certainties and even view each other’s (and our own earlier) certainties as absurd.

You may think what you like about Nietzsche’s own moral tendency, but he helps us identify morality as a philosophical problem in a more comprehensive way than if we defined the problem on the basis of the human tendency of moral introversion described above.

Morality has two faces. It consists not only of familiar certainties apparently in need of foundations. It consists also of uncertainty, change, and diversity. Certainty turns into uncertainty; and uncertainty into certainty. There is a dynamics here that we fail to see when we give in to the temptation to assume that morality already is given as a set of intuitive certainties.

I want to change Nietzsche’s notion of the task on one point. “Comparing many moralities” may not be the most useful ethical expedition if it is not combined with other investigations, since it may overemphasize facts that make all expressions of moral certainty seem idle; as a deceitful facade that we ought to get rid of once and for all.

The work we need to do rather is describing the two faces of morality simultaneously: achieving an overview of the movements back and forth between certainty and uncertainty.

Morality is stability and certainty and it is change and uncertainty.

Pär Segerdahl

We like challenging questions - the ethics blog

Don’t shoot at the patient (or at the messenger)

The newly proposed European Data Protection Directive overprotects research participants and exposes patients to greater risks of contracting illness and dying.

Thus dramatically a recent article in The Lancet Oncology can be summarized, written by Mats G. Hansson at CRB together with Gert Jan van Ommen, Ruth Chadwick and Joakim Dillner.

People who provide data to research registers are not exposed to physical risks, like participants in interventional research. The risks associated with register-based research are informational: unauthorized release of information about participants. One might ask if it even makes sense to say that people “participate in research” when researchers process large data sets.

Patients (and people in general) have significant protection from disease thanks to register-based research. For example, it is estimated that the HPV vaccine will save about 200 women from dying in cervical cancer each year, in Sweden alone. This cancer-preventive treatment became possible because researchers had access to samples dating back to the 1960s providing evidence for a causal connection between a certain virus infection and cervical cancer later in life.

  • Despite this vital value in biobanks and registers,
  • despite the fact that risks are only informational,
  • despite rigorous safety routines to prevent unauthorized spread of information,
  • despite the fact that researchers don’t study individuals but statistical patterns, and
  • despite the question if people really are “participants” in register-based research,

the EU committee proposing the new directive treats the integrity of “research participants” as so pivotal that researchers who process data not only must be subjected to the same ethical review process as for invasive research, but also must obtain informed consent from each and every one who once gave their data to the register, whenever the researchers want to study a new disease pattern.

Data protection efforts easily lose their sense of proportions, it seems, at least concerning register-based research. Not only is one prepared to expose patients to greater physical risks in order to protect research participants from (already rigorously controlled) informational risks.

One also is prepared to disturb data providers who hardly can be described as “participating” in research, by forcing researchers to recontact them about informed consent. Not only on one occasion, but time and again, year after year, each time a new disease pattern is explored in the registers. That’s what I call privacy intrusion!

Pär Segerdahl

We participate in debates - the Ethics Blog

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