The need of a bird’s-eye view

February 25, 2015

Pär SegerdahlIn the previous blog post I wrote about the tendency in today’s research to build common research platforms where data are stored and made open: available for future research, meta-analysis and critical scrutiny of published research.

The tendency is supported at EU level, by bodies responsible for research. Simultaneously, it is obstructed at EU level, by other bodies working with data protection.

The same hopeless conflict can be seen in Sweden, where the Swedish Data Inspection Board time and again stops such efforts or criticizes suggestions for how to regulate them. This month the Data Inspection Board criticized a proposed law on research databases.

It may seem as if the board just dryly listed a number of points where the proposal is inconsistent with other laws or allowed unreasonable infringement of privacy. At the same time, the Data Inspection Board seems alien to the new way of organizing research. Why on earth should researchers want to save so much data so damn long?

How can we handle these conflicts between public bodies that each has his own little mission and thus its own limited field of vision?

Pär Segerdahl

We want to be just - the Ethics Blog


Open research platforms and open data

February 11, 2015

Pär SegerdahlToday, I recommend reading about two major changes in current research. Both changes are reflected in the December issue of the newsletter:

The changes concern researchers’ relation to their material.

The first change has been discussed on the Ethics Blog. It is that samples and data that individual research groups collect begin to be saved, documented and analyzed in joint biobanks. The material is then made available to other researchers, both nationally and internationally.

This requires an attitude change among researchers who are used to store their data material locally and then use it locally. Now, one sends the material to the biobank instead, which takes care of it and provides service to researchers in the form of analysis, access to more data, advice, and more. Perhaps researchers need not always collect their own material, if relevant data are available via the biobank infrastructure.

This change is discussed in the editorial by Joakim Dillner, Acting director of BBMRI.se, and in an interview with Mark Divers, Head of the biobank facility that BBMRI.se built up at Karolinska Institutet.

The second change has not been discussed on this blog. It is featured in an interview in the newsletter with a researcher in cognitive neurophysiology, Gustav Nilsonne. It is closely related to the first, but requires a change in attitude to what it means to make research available through publication in scientific journals.

The change is about making research open not only through Open Access publication of scientific articles, but also by making raw data available. Such a change is significant in several ways:

  1. Data collected with efforts of many research participants can be used multiple times instead of disappearing in forgotten archives.
  2. Published findings can be critically examined; it becomes more difficult to cheat or be negligent.
  3. It becomes easier to make meta-analysis of data from many studies.

These changes can of course be seen as two sides of the same coin. Researchers seeking services from the biobank facility must accept that other researchers apply for access to “their” data … which thereby become open.

Pär Segerdahl

We recommend readings - the Ethics Blog


Norm fever

February 4, 2015

 

Pär Segerdahl

How does one become a Platonist; a person who believes in a world of pure ideas? This blog post tries to give an answer.

If I were to use one word to sum up the character of everything that agitates people, it would be: normativity.

As soon as we are engaged by someone’s hairstyle, by a political program, or by how some researchers treated their research participants, we perform some form of normative activity.

Think of all the things we say daily, or hear others say:

  • - It looks better if you comb it like this
  • - What a beautiful coat
  • - Do you still buy and listen to CDs?
  • - That’s not a proper way of treating people
  • - To deny women abortion violates human rights

All these normative attitudes about the tiniest and the greatest matters! Then add to this normative murmuring the more ambitious attempts to speak authoritatively about these engaging issues: attempts by hair stylists, by orators, by politicians, by ethicists, by the Pope, by sect leaders, and by activist organizations to make themselves heard above the murmuring.

A person who was troubled precisely by the latter attempts to speak more authoritatively about the issues that engage people was Socrates. He asked: Are these wise guys truly wise or just cheeky types who learned to speak with an authoritative voice?

Socrates wandered around in Athens, approaching the cockerels and examining their claims to know what is right and proper, genuine and true. These examinations often ended in acknowledgement of lack of knowledge: neither the cockerel nor Socrates himself actually knew.

Socrates’ examinations look like a series of failures. No one knows not what he claims to know. None of us even know what knowledge is!

For Socrates, however, failure is success. He converted another mortal and helped his soul discover a more ideal orientation towards pure normativity: the eternal standards of all that is. No mortal has normative authority, only the norms themselves have. You must search for them, rather than follow orators or sect leaders who just want to make themselves heard. You must orient yourself towards normativity as such, and strive towards perfection.

Socrates was feverishly attracted to this dream of pure normativity. He called his dream “love of wisdom”: philosophy. But for the dream to be more than a feverish dream the dream must be real and reality must be a dream. Another aspect of Socrates’ art of conversation was, therefore, a series of myths, parables and stories, which suggested a more real world beyond this one: a realm of eternal pure norms, the ultimate standards of all things.

One such story is about a slave boy who, although he was illiterate, could be made to “see” a truth in geometry. How was this possible? Of course, because the slave boy’s immortal soul beheld the norms of geometry before he was born among us mortals! Reminiscence of more original normative authority, truer than any mortal’s loud-voiced pretentiousness, made it possible for the slave to “see.”

Something similar occurs, Socrates implied, each time we see, for example, a beautiful building or a brave soldier. Something more primordially real than the house or the soldier – pure norms of beauty, courage, buildings, soldiers – shine through and enable us to see what we naively take for granted as reality. Primordial reality – a realm of pure norms – illuminates all things and enables us to see the beautiful building or the brave soldier (if they resemble their standards).

If normativity sums up the character of everything that engages us, it is perhaps not surprising to find that it easily makes us dream feverishly about a realm of ultimate normative authorities, called “pure ideas.”

Pär Segerdahl

We like challenging questions - the ethics blog


Bioethics behind the facade: research and new thinking

January 28, 2015

Pär SegerdahlThe finished result easily becomes a picture of the process of achieving it. For example: We hear a Beethoven symphony and think that the genius had this magnificent composition in his head. He just needed to write it down.

As if the result existed from the beginning and only needed to be put on paper. I don’t know much about Beethoven’s working process, but doubt that it consisted in writing down already completed symphonies. Maybe, during a walk, a tiny idea entered his mind: a theme that made an impression on him, but that definitely was not the finished symphony. Thereafter, he explored the theme, attentive to where it wanted to go and letting it evolve in different forms and variations. Maybe he examined the theme at the piano.

Only gradually did this creative work shift to actually sitting down and composing. But still, as an exploration of the theme, albeit in the final phase of the process. And maybe it turned out that the theme worked better for a string quartet instead.

Bioethics is often misunderstood as we misunderstand Beethoven. We identify bioethics (and research ethics) with the finished result: with ethical guidelines, with the declaration of Helsinki, with models of consent, with the system of ethical review etcetera.

Bioethicists then appear like people who just put ethical rules on paper and establish bureaucratic systems to check that they are followed by researchers.

Bartha M. Knoppers recently questioned that image, in an article with the significant title:

Ethical frameworks for biomedical research originate in processes of ethical research and thinking, often in dialogue with researchers in the field, and with patients and the public. Behind the facade, bioethics is an art of conversation as well as explorative research and new thinking. This work is not the least self-critical, for the ethical frameworks need to be constantly modified and sometimes partially dismantled.

An example of this work behind the facade is a new book on the regulation of biobanking, edited by Deborah Mascalzoni at CRB:

In this book, a number of researchers present their explorations. It gives you insight into the work processes and the conversations and debates behind the regulation of research.

One principal problem raised in the book is that regulatory systems have become increasingly complex and opaque. Should we then create even more regulation?

Deborah Mascalzoni thinks that ethical research is more than just researchers following rules written by bioethicists. Instead of facing new challenges with even more regulation, she points out that all of us can think ethically, and that scientists have a moral responsibility to reflect on how they develop their research practices.

Ethics need not be a burden for research but can be a living concern within it. It can grow and flourish with the research practices, if we dare to do what Beethoven did: trust that seemingly insignificant thoughts and ideas can grow into something beautiful and real.

Pär Segerdahl

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


Rare diseases need international research infrastructure

January 20, 2015

Pär SegerdahlThere are a few thousand diseases that you never heard the name of. They affect so few people and have no names in the common language.

These diseases are usually called rare diseases (or orphan diseases). They often (but not always) have genetic origin. They often affect children, are disabling and can even be life-threatening, and in many cases organ systems in the body degenerate.

Because the diseases are rare, they are difficult for doctors to diagnose. Even if one manages to make a diagnosis, treatments are often lacking. It’s hard to do research and develop treatments when the patient groups are small and scattered across the world.

In recent years one has begun to prioritize research on rare diseases, not least in the EU. A background to this trend is the development of biobank research. It starts to make it possible to do research on rare diseases, even though the patient groups are small and scattered across the world.

How? Since one can collect samples and data from such patient groups in biobanks that are linked with each other in international networks. Biobank networks thus give researchers access to large enough material to identify genetic and other origins of rare diseases. In this way, one can begin to develop diagnoses and treatments for small patient groups spread across the world.

In an article in the Journal of Biorepository Science for Applied Medicine,

twenty researchers, among them Mats G. Hansson, describe trends in research on rare diseases. They mention several international biobank networks developed to make such research possible, and describe the challenges that they have to deal with.

One challenge is to develop a common standard for how to, for example, document and code samples for rare diseases. Otherwise it is difficult to locate relevant samples in biobanks in different parts of the world and use them in research. One also needs to link the samples to electronic health records. Otherwise, the patterns behind the diseases will not be visible to the research.

Another challenge is that ethical review and governance operate at a national level, and often in different ways in different countries. In one case, mentioned in the article, where the researchers needed to use data from 130 patients from 30 different countries (and collaborate with 103 clinical centers), it took two years to get ethical approval of the project.

The project was not ethically controversial: 97% of the ethical review committees approved the project without requiring changes or further information. The time delay was due to problems of coordination between the governance systems in the different countries.

Another challenge mentioned in the article is to make researchers, doctors and patients aware of the existence of biobanks for research on rare diseases, and the importance of contributing to these biobank networks by collecting samples and updating databases.

The trend to link biobanks in networks has been clear for a while, even independently of the research on rare diseases. But this research really highlights a key feature in today’s biobanking: its infrastructural nature. Research on rare diseases, needing data from patients spread across the world, can therefore also likely accelerate the development of biobanks as infrastructures for future research.

Pär Segerdahl

Part of international collaborations - the Ethics Blog


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


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