Learning ethics online

November 26, 2014

Stefan ErikssonAs you read this, PhD students, researchers and professionals from Egypt, Singapore, Germany, Italy and Sweden are busy discussing publication ethics online. Next week the topic is situations where research results can be used to harm. They are trying a new kind of online research ethics training. The idea is to give them hands-on knowledge and a sense of responsibility. But can you do that online?

The hope is of course that the feeling of responsibility stays with you after you have completed the training and can be mobilised if and when you run into an ethical dilemma. The goal of any ethics training, whether online or in a classroom, should be to help the participants to become better at reflecting on their own pre-conceptions and values. And learn to put those in relation to research ethical dilemmas. In the long run, we believe this is how you can help the scientific community to uphold research integrity.

There is increasingJosepine Fernow demand on research ethics training from funding agencies and universities. At the Centre for Research Ethics & Bioethics we decided to challenge ourselves to make good training available to everyone who needs it, regardless of where they are in the world. As we write this, both of us, Stefan Eriksson and Josepine Fernow, are part of an exciting journey as teacher and student. Right now the first pilot version of the course is running and we are able to see for ourselves if it is possible to meet that goal online.

For Stefan, as developer and teacher, the aim has been to create a course that is both fun and interactive, and where everything you need is available in one place. The main driving force behind our decision to create this course came from the funding agencies. The US National Institutes of Health has raised a demand for formal training from everyone who applies for funding for research on humans. But most of the online courses available are not interactive enough and doesn’t meet their demands on content. We decided to rise to the challenge and it turns out an online course can be much more interactive than you might think at first glance.

What are the upsides to online training? For Josepine, as a student, of course there is the practical side to being able to work at your own pace. And it is convenient to have everything you need to read, watch and do available freely on the Internet. With this course it turns out it was possible to get the advantages of an online course without losing out on interaction with other participants. The discussion format to some extent also forces you to formulate and express your opinion. That isn’t always the case in a classroom full of other students.

The course is made to fit everyone from graduate student to senior researcher. It works for professionals and officials from funding agencies and research ethics committees and everyone else who needs to be aware of and handle research ethics in one form or the other. In the pilot training we are running now it has become clear that there are only advantages to having a broad range of students. The fact that the people in the course have different backgrounds and nationalities adds a bonus: Discussing with people with different roles in different organizations, from different countries, with different cultures, and different regulatory systems serves to show that at the end of the day, we are all just people. And as people, we need to be able to mobilise our sense of responsibility when faced with research ethical dilemmas.

Stefan Eriksson, Associate Professor of Research Ethics

Josepine Fernow, Co-ordinator


The teacher as an example

November 12, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogTeachers want to affect their students. The intent, after all, is for students to acquire certain knowledge and skills. To achieve this, the teacher exhibits exemplars of what the students should know. The teacher talks in exemplary ways about the industrial revolution, about bioethical principles, or shows exemplars of what it means to “add 2″ or what a “chemical reaction” is.

The students are then given exercises where they reproduce the exemplars in their own speech, writing and practice. Finally, they are examined. How well have they been affected by the educationally exhibited exemplars and by the exercises?

This description of the learning situation is greatly reduced. Not least because of its focus on the teaching of knowledge and skills. The teacher’s role is reduced to that of holding up exemplars of what the students should know (or be able to do).

But the teaching room contains one additional “exemplar” that is quite important: the teacher.

How does the teacher function as an exemplar? By being there as “a person who …” The teacher functions as a living example of a person who is engaged in history, in bioethics, in mathematics or in chemistry.

The teacher is an example of what one can be (historian, bioethicist …). Not just of what one should know.

The teacher’s exemplary role as “a person who…” can be problematic. Suppose that the physics teacher is a man who almost exclusively addresses the male students. He thereby shows (through his “exemplary” presence) that a physicist is (preferably) male.

Nevertheless, I submit that the teacher’s exemplary presence as “a person who …” is essential. Without it, the students become reduced. Education that puts too much emphasis on knowledge and skills may even make it exemplary that this is what an “educated person” is: A one-dimensional functionary equipped with certain knowledge and skills.

Who desires to be that? Is it even possible? Or is it to overlook what we inevitably are: living persons who…?

Pär Segerdahl

We care about education


Direct to consumer genetic tests: soon history?

November 5, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogMore and more companies are selling genetic tests directly to consumers. You don’t need a prescription. Just go online and order a test and you’ll get a cotton swab with which you scrape the inside of your cheek.

You then send the cotton swab to a laboratory and await the answer: What do your genes have to say about your disease risks?

These tests may seem harmless. It’s only a bit of information. No one can be harmed by some information, it may seem.

But the information is sensitive and can have consequences. For example, the test can provide information about genetic predispositions that you can transfer to your children. Paternity can be determined. You can get information that you are at risk for a certain form of cancer or can suffer side effects from the drug that your doctor prescribed. In addition, information about risk of disease can cause you to begin to exhibit symptoms prematurely!

Are the tests reliable? How should the information be interpreted in your case? What should you do with it? – Can one really market such tests directly to consumers as any commercial product?

No, it looks like it soon will be impossible. The US Food and Drug Administration (FDA) recently informed a number of companies that sell genetic tests directly to consumers that the tests will from now on be treated as medical devices. Such devices must meet specific quality requirements and be approved product by product.

Also in Europe a change is underway, going even further. The European Parliament is proposing a regulation that would more or less ban selling genetic tests directly to consumers.

This EU proposal is described and discussed in an article in Science, written by Louiza Kalokairinou, Heidi Howard (from CRB) and Pascal Borry:

From having been regarded as harmless, the authors write, genetic tests are now proposed to be classified as medical devices on risk level C (on a scale from A to D). In addition, a medical prescription will be required to get a genetic test, and the test must be ordered by a physician. Genetic counseling must also be given.

Genetic tests are here to stay, but presumably in a different context than today. The proposed EU regulation requires a medical context for genetic testing, the authors write: a patient-doctor relationship.

The article ends asking: Will doctors’ waiting rooms soon to be filled by people who want prescriptions for genetic tests? Can doctors keep up with the rapid development of the field, which is required to interpret new genetic tests and assess how these can benefit individual users?

Whereupon I ask: If it is unclear if even doctors can manage the genetic tests, how could one have assumed that individual consumers could do it?

Pär Segerdahl

Approaching future issues - the Ethics Blog


How can the brain be computer simulated?

October 29, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogA computer simulated human brain – that undoubtedly sounds like science fiction. But the EU flagship project, the Human Brain Project, actually has computer simulation of the brain as an objective.

What will be accomplished during the ten years that the project is financed will presumably be simulations of more limited brain functions (often in the mouse brain). But the proud objective to simulate the human brain has now been formulated in a serious research project.

But what does “computer simulation of the brain” mean?

In an article in the journal Neuron Kathinka Evers and Yadin Dudai discuss the meaning of simulation of the brain. Kathinka Evers from CRB leads the philosophical research in the EU Project and Yadin Dudai is a neuroscientist from the Weizmann Institute of Science who also works in the project.

The article combines philosophical and scientific vantage points to clarify the type of simulation that is relevant in neuroscience and what goals it may have. Several of the questions in the article are relevant also for the simulation of more limited brain functions. For example, the question if the ability to make a computer simulation of a brain function means that you understand it.

The most thought-provoking questions, however, concern the big (but distant) goal to simulate a whole human brain. Is it possible in principle, given that the brain is embedded in the body and is in constant interaction with it? Is it possible, given that the brain interacts not only with the body but also with a social environment?

Does simulating the brain require that one also simulates the brain’s interaction with the body and the social context in which it operates? Kathinka Evers thinks so. The attempt to simulate the brain is too limited if one does not start out from the fact that the brain is in constant interaction with an environment that constantly changes it.

The brain must be understood (and simulated) as an “experienced brain.”

Suppose that one day one manages to simulate an experienced human brain in intensive interaction with a bodily and social environment. Has one then simulated a brain so well that one created consciousness?

The questions in the article are many and breathtaking – read it!

Pär Segerdahl

We like challenging questions - the ethics blog


The Ethics Blog soon as a book

October 15, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogAs you may have noticed, I have for some time not posted quite as often as before. That is because I’m right now compiling previous posts, turning the Ethics Blog into a book.

I thought it would go quickly to make a blog book. But it takes time to choose appropriate texts and arrange them around different themes. And then edit the texts so they are nice to read in printed form.

Actually, I’m working on two books. There is a Swedish version of the Ethics Blog: “Etikbloggen” (link in the right margin). The text for the English book was sent to a graphic designer just a while ago. It will be exciting to see the results!

Both books will be printed in December. Hopefully we can also make them available in PDF format.

Now you know! Perhaps posting will be a bit sporadic for a few weeks, while I continue to work with the text for the Swedish blog book.

Pär Segerdahl

We like ethics : www.ethicsblog.crb.uu.se


Does bioethics understand the family?

September 30, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogTraditional bioethics does not pay sufficient attention to the role that family relationships can play, for example, in decisions about organ donation. New opportunities in healthcare create moral problems that bioethics therefore cannot identify and manage. To identify and understand these moral problems requires a specific ethics of families, writes among others Ulrik Kihlbom in an article in the Journal of Medical Ethics.

The authors are members of the “Network on ethics of families.” In the article, they use a striking example of a moral problem that becomes invisible in standard bioethics. I believe the example is authentic.

Annie’s brother Stewart has kidney problems. Annie would like to donate one of her kidneys to her brother, but cannot because she does not have matching blood or tissue type. Thanks to a new healthcare initiative, she can however join a donor pool. If the computer can identify a suitable person in the pool who can receive her kidney and another suitable person who can donate a kidney to her brother, the result is the same: Annie donates, Stewart receives.

But Annie does not perceive it as the same thing. She cannot explain why she suddenly becomes hesitant to donate her kidney, when the healthcare team treats indirect donation to the brother via the pool as completely analogous to direct donation to her brother.

Annie does not reason according to the professional logic that the healthcare team and many bioethicists use. She is willing to donate a kidney to her brother. To donate to a stranger to thereby enable her brother to get a kidney is not the same thing.

Understanding Annie’s problems with the healthcare team’s proposal requires a different form of ethical thinking, a family ethics.

Another aspect of Annie’s willingness to donate a kidney to her brother that is made ​​invisible by traditional bioethics is its unconditional character. Donating an organ to a needing member of the family can strike families as a given responsibility. They can feel they have no choice. This is difficult to understand from a traditional bioethical perspective that emphasizes individuals’ autonomous and rational choices between alternatives.

I would like to add that the professionally well-motivated donor pool possibly even plays on the family ethics that one does not understand. Are not new donors recruited by appealing to the unconditional willingness to donate within the family?

The article moreover contains a discussion about problems of justice, requiring a perspective from family ethics to be seen. Read it!

Pär Segerdahl

We recommend readings - the Ethics Blog


Conversations with seemingly unconscious patients

September 23, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogResearch and technology changes us: changes the way we live, speak and think. One area of ​​research that will change us in the future is brain research. Here are some remarkable discoveries about some seemingly unconscious patients; discoveries that we still don’t know how to make intelligible or relate to.

A young woman survived a car accident but got such serious injuries that she was judged to be in a vegetative state, without consciousness. When sentences were spoken to her and her neural responses were measured through fMRI, however, it was discovered that her brain responded equivalently to conscious control subjects’ brains. Was she conscious although she appeared to be in a coma?

To get more clarity the research team asked the woman to perform two different mental tasks. The first task was to imagine that she was playing tennis; the other that she visited her house. Once again the measured brain activation was equivalent to that of the conscious control subjects.

She is not the only case. Similar responses have been measured in other patients who according to international guidelines were unconscious. Some have learned to respond appropriately to yes/no questions, such as, “Is your mother’s name Yolande?” They respond by mentally performing different tasks – let’s say, imagine squeezing their right hand for “yes” and moving all their toes for “no.” Their neural responses are then measured.

There is already technology that connects brain and computer. People learn to use these “neuro-prosthetics” without muscle use. This raises the question if in the future one may be able to communicate with some patients who today would be diagnosed as unconscious.

- Should one then begin to ask these patients about informed consent for different treatments?

Here at the CRB researchers are working with such neuro-ethical issues within a big European research effort: the Human Brain Project. Within this project, Kathinka Evers leads the work on ethical and societal implications of brain research, and Michele Farisco writes his (second) thesis in the project, supervised by Kathinka.

Michele Farisco’s thesis deals with disorders of consciousness. I just read an exciting book chapter that Michele authored with Kathinka and Steven Laureys (one of neuro-scientists in the field):

They present developments in the field and discuss the possibility of informed consent from some seemingly unconscious patients. They point out that informed consent has meaning only if there is a relationship between doctor/researcher and patient, which requires communication. This condition may be met if the technology evolves and people learn to use it.

But it is still unclear, they argue, whether all requirements for informed consent are satisfied. In order to give informed consent, patients must understand what they agree to. This is usually checked by asking patients to describe with their own words what the doctor/researcher communicated. This cannot be done through yes/no-communication via neuroimaging. Furthermore, the patient must understand that the information applies to him or her at a certain time, and it is unclear if these patients, who are detached from the course of everyday life and have suffered serious brain injury, have that understanding. Finally, the patient must be emotionally able to evaluate different alternatives. Also this condition is unclear.

It may seem early to discuss ethical issues related to discoveries that we don’t even know how to make intelligible. I think on the contrary that it can pave the way for emerging intelligibility. A personal reflection explains what I mean.

It is tempting to think that neuroscience must first determine whether the patients above are unconscious or not, by answering “the big question” how consciousness arises and becomes disturbed or inhibited in the brain. Only then can we understand these remarkable discoveries, and only then can practical applications and ethical implications be developed.

My guess is that practical technological applications, and human responses to their use, rather are venues for the intelligibility that is required for further scientific development. A brain does not give consent, but perhaps a seemingly unconscious patient with neuro-prosthesis. How future technology supported communication with such patients takes shape – how it works in practice and changes what we meaningfully can do, say and think – will guide future research. It is on this science-and-technology supported playing field that we might be able to ask and determine what we thought neuroscience had to determine beforehand, and on its own, by answering a “big question.”

After all, isn’t it on this playing field that we now begin to ask if some seemingly unconscious patients are conscious?

Ethics does not always run behind research, developing its “implications.” Perhaps neuro-ethics and neuroscience walk hand in hand. Perhaps neuroscience needs neuro-ethics.

Pär Segerdahl

In dialogue with patients


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