Online course in research ethics, spring 2016

January 27, 2016

Pär SegerdahlAnyone who manages research also needs to be able to reflect on research. Not only the researchers themselves, but also funding bodies, journal editors, members of research ethics committees, administrators, journalists, organizations, politicians, and others.

How do you act if you suspect research misconduct, and what is it? What are the ethical and legal regulations governing data management or research on humans and animals?

If you want to learn more about these issues, or perhaps about publication ethics and authorship rules, conflicts of interest, mentor/trainee responsibilities, biosecurity and more – then we can help you. We give an online course in research ethics for medicine and the life sciences.

The course runs for ten weeks, from April 4 to June 10, every week with its own theme (the last week is devoted to sharing what you learned with your home institution). The course includes video lectures and texts to read, but also interactive exercises and regular e-meetings with other students and with the teacher.

The course is given in English and is open to students from all over the world. If you want to know what some of the former students have to say about the course, you can read more here. And if you want to know who the course is aimed at, read more here.

Research ethical responsibility is vital and it is important that ethics education reaches out. The course fee is € 1.125 (including tax), and to students who cannot receive financial support from their home institution we offer a limited number of scholarships for which application deadline is February 15.

If you don’t need a scholarship you can apply for the course until course start.

Pär Segerdahl

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Dynamic consent in biobank research: better than broad consent?

October 2, 2013

Biobanks make contributing to medical research easy: easier than when the research is performed on living human bodies.

I simply donate my sample and consent to storage for certain kinds of future research, under specified conditions like that the research is ethically reviewed and the sample is coded so that it cannot be traced to me without keys. I consent to a specific biobank framework.

Thereafter, the research is done on the sample and data in registers. What an easy way of contributing to research!

Too easy, it is sometimes objected. Broad consent to future research implies ethically problematic passivity among biobank participants, the objection goes. Participants are precluded from exercising fundamental rights and freedoms. Power is transferred from participants to researchers.

What’s the solution, then? An often proposed solution is familiar to all who make choices on the internet. Passive biobank participants can be activated by keeping themselves updated via a website. On this website, they give dynamic consent in real time, as researchers continually inform about proposed research with donated samples.

Dynamic consent would empower biobank participants, make them engaged in the decision-making process and equal partners in the research.

It sounds brilliant! What an easy solution!  In the case of large population-based biobanks, however, it would mean that hundreds of thousands would spend the rest of their lives keeping themselves updated about planned research with samples donated perhaps decades ago, and for each new project make active choices: yes or no?

Researchers would be free to come and leave the biobank, while participants are fettered to a life-long commission as ethical gate-keepers, with their own login information.

Seduced by sugary phrases? In an article last month – Broad versus dynamic consent in biobank research – Norwegian research ethicists identify six often cited reasons in favor of a dynamic consent model for biobanks. For each cited claim, they are able to adduce reminders and considerations that make the claim notably less appetizing, at least to me.

This post would become long-winded if I informed about all objections to the claims in favor of dynamic consent: who reads long texts on the internet? Two central objections, however, are that a dynamic consent model would invite people into the therapeutic misconception and that it would individualize the ethical review of public health research.

Still, it is vital that biobanks continually inform about ongoing and planned biobank activities, making the research transparent, and giving those who might want to opt-out opportunity to do so.

Pär Segerdahl

The temptation of rhetoric - the ethics blog

An ape genius, or just an ordinary talking ape?

June 12, 2013

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

Project Nim: a tragedy that was interpreted as science?

October 12, 2012

Last week I wrote about the significance of negative results in science. This week I saw one of the saddest documentaries I’ve ever seen, featuring the tragic context of an often cited negative result in science.

The documentary, Project Nim (2011), was about the psychologist Herb Terrace’s attempt in the 1970:s to teach American sign language to a young chimpanzee, in a specially designed classroom at Columbia University in New York City. “Specially designed” here meant bare and small in order to avoid suggesting activities that are more exciting for a young ape than reproducing the teacher’s hand movements.

Terrace’s personal stance to the language project struck me as odd. Scientifically, he wanted to test the hypothesis that an ape can be taught to construct sentences. This would disprove Chomsky’s view that language is an innate and uniquely human trait. From a more “personal” point of view, what excited Terrace most was the prospect of experiencing a nonhuman animal communicate ape thoughts.

It would be like meeting an alien from outer space who miraculously communicated foreign thoughts to humankind. Treating young Nim as such an alien research subject strikes me opposed to the very idea of human language and communication.

The whole project was a mess, ill-planned and dysfunctional from the start. And yet there were happy moments where good relationships developed between Nim and responsible caretakers/teachers/surrogate parents outside the classroom.

In these more “distractive” real-life situations, where the point wasn’t about reproducing the teacher’s signs but about doing meaningful things together and communicating about them while doing them, it seemed Nim used signs to talk. The caretakers were optimistic, as was Terrace.

However, as Nim got bigger and stronger and approached adolescence, new problems appeared. He began to attack and bite his teachers, and Terrace feared being sued. These troublesome behaviors developed more rapidly than Nim’s signing abilities, and Terrace was worried.

One day, Terrace called his staff to a meeting and declared that the project was over. They had collected suffient data, and Nim could be sent back to the primate research center in Oklahoma where he was born.

The rest of Nim’s life was was awful, terrifying (although responsible caretakers did try to make a difference).

Simultaneously, Terrace started reporting the project; in a book as well as in an article published in Science. He sat down, watched videotaped interactions between Nim and his teachers, and came to the conclusion that Nim had not acquired the ability to use signs linguistically in genuine communication with humans. He was merely mirroring the teacher’s signs (or begging for things).

The negative result that Terrace published perhaps received more attention than any other scientifically published negative result. In spite of the fact that the project was dysfunctional from the start, Terrace’s publications were welcomed as presenting hard scientific evidence that apes cannot learn to communicate in language.

I’m not so sure what conclusions can be drawn from a research project that could just as well be described as a dysfunctional family history ending in tragedy. Moreover, as Peter Singer observed when he watched the documentary, Terrace could hardly end the project and send Nim away without reporting negative results.

Can we trust Terrace’s judgment when we watched the videotapes and decided that the ape he sent away did not speak with the fellow humans with whom he interacted?

Anyway, the book that Terrace wrote, Nim: a Chimpanzee Who Learned Sign Language (1979), is fascinating and well worth reading. It contains vivid descriptions of Nim’s life with humans; recollections that often seem to contradict the conclusions that Terrace finally reached.

Pär Segerdahl

Understanding enculturated apes - the ethics blog

How unspecific is broad consent?

September 13, 2012

In response to an informative article on personalized medicine and biobanking in Nature Biotechnology, a recent letter to the Editor defends broad consent for biobanking.

The three letter writers emphasize the patient and donor perspective:

  • “…patient donors actually express concern that study-specific consent can be burdensome and impede research.”

Given these donors’ desire to give so-called broad consent, I want to highlight two problematic aspects of the distinction between specific and broad consent.

The first is that the word “broad” consent may give rise to the impression that the consent is so general and vague that it cannot be seen as informed consent to anything specific at all. But broad consent is not “broad” in such an absolute sense, akin to vagueness. It is “broad” only in a relative sense: in relation to the historically more prevalent case of consenting to individual research projects.

The distinction between specific and broad consent is a distinction between two ways of being specific. One of these ways of being specific dominated the scene first. It therefore functioned as a linguistic standard. The other way of being specific had to put up with being called “broad.”

Specific consent, then, is specific only in a specific sense: one that is historically conditioned and changeable. It is not the golden standard of exactitude. Consent can therefore be “broad” without being vague.

The second problematic aspect is that when people donate samples to biobanks, the exact nature of the individual research projects that might use their samples is less relevant to them than when they consent to invasive procedures in clinical trials.

The risks are minimal in biobank research. Donors therefore look more to the practical utility of the research than to the research itself. Forcing them to consider the purposes and questions and procedures of individual research projects is forcing them to attend to a level of medical research that is less relevant to them as donors.

In short, a historically and linguistically insensitive demand for “specific consent” in biobanking may hinder donors from giving the kind of specific consent they authentically want to give in this new but more and more prevalent context.

Pär Segerdahl

Minding our language - the Ethics Blog

Henrietta Lacks and the power of rhetoric

February 3, 2012

Paradoxically, the victim can have the most powerful position, namely, as a “rhetorical figure.”

I sense this rhetorical power in Rebecca Skloot’s bestselling book, The Immortal Life of Henrietta Lacks. I think less freely under the spell of this rhetoric. My thoughts are not allowed to discover new aspects of things. Questions are being silenced and the direction of my “reasoning” is predestined.

Who dares to be scrutinizing in the confrontation with the tear-jerking language that occurs on the author’s website for the book? This could be the lyrics of a whole genre of sad songs.

We read and write about Henrietta Lacks as if we were spellbound.

The most spellbound of all seem to be the reviewers of the book. Many excel in morbid presentations of a both dead and living body abducted by science; of a poor black woman who anonymously “paid the price” for a whole series of profitable medical discoveries and innovations.

Who wouldn’t yield to the temptation?

As a result, however, obvious questions are silenced. For example: Is it not wonderful that she was anonymous (until the publication of the bestseller)? Is it not splendid that scientists speak of “HeLa cells” and not about “Henrietta Lacks’ cells”? Wasn’t her integrity protected that way (until the publication of the bestseller)?

We don’t know how Henrietta Lacks would have described her destiny. Would she describe herself as a victim of science (rather than as a victim of cancer, for example)? Or has she become one of the most recent victims of the enchanting rhetoric of the victim?

(I wish to thank Joanna Forsberg for inspiration. A comment of hers on our Swedish Etikbloggen helped break the spell for me and gave birth to this post.)

Pär Segerdahl

The temptation of rhetoric - the ethics blog

Protecting children: through research or from research?

January 20, 2012

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

We like challenging questions - the ethics blog

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