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

Tag: future prospects (Page 7 of 10)

Interesting Big Data-symposium on video

Pär SegerdahlMany posts on the Ethics Blog are about how new possibilities to collect and process large amounts of data change the horizon for medical research.

But “Big Data” makes its entry also in the humanities and social sciences. How does the horizon change there? How is the understanding of humans and of society affected when processing large amounts of data opens up a new field of vision for humanists and social scientists?

A symposium in Gothenburg last summer took up the issues, I saw at Christian Munthe’s blog (“Philosophical Comment”). He links to a video recording from the symposium and I link to Christian’s blog post; that way you’ll find both the blog and the video:

When you have time, take a look – the presentations are exciting!

Pär Segerdahl

We like challenging questions - the ethics blog

Bioethicists suggest broad consent for biobank research

Pär SegerdahlIt is still unclear what kind of consent should be used when collecting biological samples for future research. Different forms of consent are practiced, which creates another uncertainty: which research is actually permitted with the collected samples?

This haphazard situation leads to unintended constraints on research. But it also leads to research sometimes being carried out without consent.

Against this background, the US National Institutes of Health (NIH) organized a workshop to discuss whether it is ethically reasonable to manage these uncertainties by using broad consent for future research when collecting biological samples.

The group of bioethicists who attended the workshop, including Mats G. Hansson, recently published their thoughts and conclusions in the American Journal of Bioethics:

The group’s proposal is that broad consent is ethically reasonable and often the best option, if it has three components:

  1. Consent is conducted initially, in connection with sample collection.
  2. There is a system for oversight and approval of future research.
  3. As far as possible, there should be ongoing communication with, and information to, donors.

Biological samples are collected in a variety of contexts. It is here that the haphazard situation arises, if different forms of consent are used, or perhaps no consent at all. By initially informing potential donors of the wide range of research that can be carried out, they can take a position on risks and benefits of donation (given the oversight and the general conditions of the future research that they are informed about).

The group emphasizes that broad consent gives donors control over the use of samples, while minimizing costs and burdens for both donors and researchers.

They also point out that empirical studies show that most people want to decide if their samples may be used for research. Most respondents also say that the decision is not influenced by the specific details of the future research (e.g. what diseases are studied, what techniques are used, or which parts of the sample are studied).

Of course there are examples of research that can be perceived as controversial, such as human cloning. But broad consent can be combined with specific restrictions. Oversight moreover considers whether research proposals can be said to comply with the donors’ values.

If donors still hesitate, they are free to choose not to donate the sample.

Pär Segerdahl

Approaching future issues - the Ethics Blog

When writing becomes investigating

Pär SegerdahlWe write for many reasons. To remember, to instruct, to tell, to amuse…

Sometimes we write to investigate. Investigate what? Of course, something that we don’t really understand and therefore wonder about.

Writing is also a prestigious linguistic medium. Printed products (books and articles) often express the opposite of incomprehension and wonder. This is not surprising, since the printed product is the end result of long work.

This creates problems for the investigating beginner. One of the difficulties of writing about difficult things is to dare express your lack of understanding. You have to put your finger (or pen tip, or keys) precisely on your incomprehension.

Instead, one tends to quickly write up an impressive facade that hides one’s incomprehension. One mimics the style of the finished printed matter. One then starts at the wrong end. One starts at the end.

If you just slow down and ask yourself: What do I really understand here? What don’t I understand? And then honestly write it down – in the form of questions – you soon begin to write in a way that explores what needs to be clarified.

The moment your writing makes contact with your incomprehension, the writing becomes explorative. It will also come alive, because you don’t write as if you already were finished with everything. You make discoveries and you change during the work.

I would liken it to daring to ski down the slopes for the first time and dare to trust that you can turn back and forth so as to maintain a speed that you yourself can keep up with.

The equivalent of “turning back and forth” are the questions you regularly ask based on your incomprehension. Without the questions, you soon rush downhill and risk breaking your neck.

To write in an explorative way is to think. Therefore, philosophy doesn’t resemble a profession, because here it is your lack of competence that drives the work.

Pär Segerdahl

The Ethics Blog - Thinking about thinking

Our publications on neuroethics and philosophy of the brain

Pär SegerdahlAt CRB, an international, multidisciplinary research group works with ethical and philosophical questions that are associated with the neuroscientific exploration of the human mind and brain.

As part of the European Human Brain Project, they approach not only ethical questions that arise, or may arise, with the development and practical application of neuroscience. They also more fundamentally explore philosophical questions about, for example, the concepts of consciousness, human identity, and the self.

In order to give an overview of their extensive work, we recently compiled a report of their articles, books and book chapters. It is available online:

The report also contains abstracts of all the publications. – Have a look at the compilation; I’m sure you will find it fascinating!

I might add that we recently updated similar reports on our work in biobank ethics and in nursing ethics:

Here too you’ll find abstracts of our interesting publications in these fields.

Pär Segerdahl

Approaching future issues - the Ethics Blog

Second issue of our newsletter about biobanks

Pär SegerdahlNow you can read the second newsletter this year from CRB and BBMRI.se:

The newsletter contains four news items:

1. Anna-Sara Lind presents a new book, Information and Law in Transition, and the contributions to the book by CRB researchers.

2. Anna-Sara Lind describes the situation for the temporary Swedish law on research registries.

3. Mats G. Hansson reports on a modified version of broad consent for future research.

4. Josepine Fernow presents a new article by Jennifer Viberg on the proposal to give research participants freedom of choice about incidental findings.

(Link to PDF version of the newsletter)

Pär Segerdahl

We recommend readings - the Ethics Blog

Where is consciousness?

 

Michele FariscoWould it be possible to use brain imaging techniques to detect consciousness and then “read” directly in people’s brains what they want or do not want? Could one, for example, ask a severely brain injured patient for consent to some treatment, and then obtain an answer through a brain scan?

Together with the philosopher Kathinka Evers and the neuroscientist Steven Laureys, I recently investigated ethical and clinical issues arising from this prospective “cerebral communication.”

Our brains are so astonishingly complex! The challenge is how to handle this complexity. To do that we need to develop our conceptual apparatus and create what we would like to call a “fundamental” neuroethics. Sound research needs solid theory, and in line with this I would like to comment upon the conceptual underpinnings of this ongoing endeavor of developing a “fundamental” neuroethics.

The assumption that visualizing activity in a certain brain area can mean reading the conscious intention of the scanned subject presupposes that consciousness can be identified with particular brain areas. While both science and philosophy widely accept that consciousness is a feature of the brain, recent developments in neuroscience problematize relating consciousness to specific areas of the brain.

Tricky logical puzzles arise here. The so called “mereological fallacy” is the error of attributing properties of the whole (the living human person) to its parts (the brain). In our case a special kind of mereological fallacy risks to be embraced: attributing features of the whole (the brain) to its parts (those visualized as more active in the scan). Consciousness is a feature of the whole brain: the sole fact that a particular area is more active than others does not imply conscious activity.

The reverse inference is another nice logical pitfall: the fact that a study reveals that a particular cerebral area, say A, is more active during a specific task, say T, does not imply that A always results in T, nor that T always presupposes A.

In short, we should avoid the conceptual temptation to view consciousness according to the so called “homunculus theory”: like an entity placed in a particular cerebral area. This is unlikely: consciousness does not reside in specific brain regions, but is rather equivalent to the activity of the brain as a whole.

But where is consciousness? To put it roughly, it is nowhere and everywhere in the brain. Consciousness is a feature of the brain and the brain is more than the sum of its parts: it is an open system, where external factors can influence its structure and function, which in turn affects our consciousness. Brain and consciousness are continually changing in deep relationships with the external environment.

We address these issues in more detail in a forthcoming book that I and Kathinka Evers are editing, involving leading researchers both in neuroscience and in philosophy:

Michele Farisco

We want solid foundations - the Ethics Blog

 

Openness as a norm

Pär SegerdahlWhy should scientists save their code keys as long as 20 years after they conducted their study, the Swedish Data Inspection Board apparently wonders. In its opinion to a proposed new Swedish law on research databases, it states that this seems too long a period of time.

Yet, researchers judge that code keys need to be saved to connect old samples to new registry data. The discovery of a link between HPV infection and cervical cancer, for example, could not have been made with newly collected samples but presupposed access to identifiable samples collected in the 1960s. The cancer doesn’t develop until decades after infection.

New generations of researchers are beginning to perceive it as an ethical duty to make data usable for other scientists, today and in the future. Platforms for long-term data sharing are being built up not only in biobank research, but also in physics, in neuroscience, in linguistics, in archeology…

It started in physics, but has now reached the humanities and the social sciences where it is experienced as a paradigm shift.

A recent US report suggests that sharing data should become the norm:

Research is obviously changing shape. New opportunities to manage data mean that research is moving up an IT-gear. The change also means a norm shift. Data are no longer expected to be tied to specific projects and research groups. Data are expected to be openly available for a long time – Open Access.

The norm shift raises, of course, issues of privacy. But when we discuss those issues, public bodies can hardly judge for researchers what, in the current vibrant situation, is reasonable and unreasonable, important and unimportant.

Perhaps it is profoundly logical, in today’s circumstances, to give data a longer and more open life than in the previous way of organizing research. Perhaps such long-term transparency really means moving up a gear.

We need to be humbly open to that possibility and not repeat an old norm that research itself is leaving behind.

Pär Segerdahl

Approaching future issues - the Ethics Blog

Biobank news

Pär SegerdahlThe first newsletter for 2015 from CRB and BBMRI.se is now available for reading:

The main news item, by Anna-Sara Lind, is about the still unclear status for a new European data protection regulation (intended to replace the old directive).

You’ll also find items by Josepine Fernow about our blog books, about a newly released anthology on biobank regulation (edited by Debora Mascalzoni), and information about a new online course in research ethics (developed by Stefan Eriksson and given for the first time next autumn).

You’ll also find a link to the PDF version of the newsletter.

Pär Segerdahl

We recommend readings - the Ethics Blog

The need of a bird’s-eye view

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

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

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