The Ethics Blog is now available as a book!

December 17, 2014

Pär SegerdahlDuring the autumn, Josepine Fernow and I selected texts from the Ethics Blog and compiled them into a book. Last week we had the book release!

When blog posts end up on paper, in a book, they can be read like aphorisms: slower than when surfing the net.

I hope that also the PDF version of the book will support slow reading.

We also compiled a Swedish book – here are links to both books:

Welcome to download and read – Merry Christmas!

Pär Segerdahl

(Note: If you read the PDF books via the web browser, fonts and formatting are sometimes affected. If this happens, please download the files on the hard drive.)

We think about bioethics : www.ethicsblog.crb.uu.se


How do people live with genetic risk?

December 3, 2014

PÄR SEGERDAHL Associate Professor of Philosophy and editor of The Ethics BlogFor the doctor, the patient’s disease is a virus infection, a non-functioning kidney, a mutation. The disease is a disorder within the patient’s body.

But for the patient, the disease is not least a disorder of his or her life and of how the body functions in daily life. The disease disrupts the patient’s plans and direction of life. This can be experienced with grief as a loss of what was “one’s life.”

The concept of disease is ambiguous. It has one meaning in medicine; another in the patient’s own life and experience. Also the diseased body is ambiguous. The doctor’s conception of the patient’s bodily disorder is something else than the patient’s experience of the disorder of the body.

At one of our seminars, Serena Oliveri (see below) discussed how people experience genetic risk of disease.

Also genetic risk is ambiguous I believe Oliveri wants to say. Genetic risk has one meaning in genetics (hard to grasp even for geneticists and physicians). But what happens in people’s own lives when they get to know the risk? How does one live with the risk of developing breast cancer or Alzheimer’s disease in the future? How does one live as “someone who is at risk?”

Oliveri indicates that the challenge here isn’t only that of informing people in more comprehensible ways. No matter how well the doctor explains the disease or the genetic risk to the patient, disease and genetic risk continue to be ambiguous. Disease and genetic risk continue to have different meanings in the medical setting and in people’s own lives.

The ambiguity is inevitable. For we do not cease to live and to experience life just because some medical or genetic issue was explained to us in very comprehensible ways. So how does life change when it becomes a life with genetic risk? That question needs to be investigated.

The ambiguity is a responsibility. Today, it is becoming increasingly easy and cheap to provide people with genetic risk information. You can even buy your own genetic test online! That aspect of genetics develops more rapidly today than the methods of treating or giving advice to people at risk.

Through genetic tests, then, it has become very easy to create people who “live at risk” without us really knowing yet what it means in those people’s lives. And without us really knowing yet what they should do with the risk in the form of treatments or changes in lifestyle.

We are dealing with ambiguous concepts, Oliveri points out, and therefore we face double challenges.

Pär Segerdahl

  • Serena Oliveri, PhD, is a Post-Doc researcher in Cognitive Psychology and Decision-Making processes at the University of Milan and a member of the Applied Research Unit for Cognitive and Psychological Science at the European Institute of Oncology (IEO). Her research interests focus on medical decision making, risk analysis related to genetic information, effects on cognitive functions of cancer treatments and cognitive enhancement. She is author of several scientific papers published on indexed peer-reviewed international journals. She participates in the project “Mind the risk” at CRB, which among other issues investigated the questions in this post.

In dialogue with patients


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


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