Our publications on neuroethics and philosophy of the brain

June 30, 2015

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


Laboratories interpret genetic test results differently

June 15, 2015

Pär SegerdahlA new study suggests that the results of genetic tests are not always as reliable as we want to believe. A comparison between laboratories providing these tests shows that the same genetic variant can be interpreted differently.

A single gene variant can thus be interpreted as an increased risk of breast cancer by one laboratory, but as no increased risk by another.

Given that the results of genetic tests can motivate a person to undergo, or not undergo, preventive surgery, this is quite alarming.

Genetic risks are not literally written in our genes. They require interpreting the significance of different genetic variants. The interpretation requires research that can show whether the variant is associated with increased risk of disease or not.

Most variants cannot be interpreted at all. Many are so rare that there is no data to even begin interpreting their meaning.

If I understand correctly, interpretations differ partly because laboratories do not always share their data. Their interpretations are based on limited studies using their own data. Such studies may point in different directions.

In addition to emphasizing the importance of open data, all this shows that we cannot take genetic tests or effective healthcare for granted. They require ongoing research work with large amounts of data.

We easily neglect this: how research continuously underpins healthcare.

But even with better interpretations of genetic tests, it will be difficult to interpret what the results mean for the individual.

Genetic risk continues to be a complex concept.

Pär Segerdahl

Following the news - the ethics blog


All you need is law? The ethics of legal scholarship

June 9, 2015

Moa Kindström DahlinWorking as a lawyer in a multidisciplinary centre for research ethics and bioethics, as I do, often brings up to date questions regarding the relationship between law and ethics. What kind of ethical competence does academic lawyers need, and what kind of ethical challenges do we face? I will try to address some aspects of these challenges.

First, I must confess. I am a believer, a believer of law.

That does not mean that I automatically like all regulations, it is just that I cannot see a better way to run the world, but through a common system of legal norms. Believing in law means that I accept living in a different universe. I know the non-lawyers cannot always see my universe, but I see it clearly, and I believe in it. You’ll have to trust me – and all other lawyers – through training and education, we see this parallel universe and believe in it.

I do not always like what I see, but I do accept that it exists.

I think that understanding a lawyer’s understanding of what law is, is a necessary precondition for going deeper into the understanding of what I here refer to as the ethics of legal scholarship. So, what is law? This question has a thousand answers, stemming from different philosophical theories, but I choose to put it like this:

Law is an idea as well as a practical reality and a practice.

As a reality, law is the sum of all regulation, locally (e.g. Sweden), regionally (e.g. Europe) and internationally. For example, the statutes, the preparatory works, court decisions, the academic legal literature, the general legal principles and other legal sources where we find the answers to questions such as “Is it legal to do this or that?” or “Might I be responsible for this specific act in some way?”

The practice of law has to do with the application of general legal knowledge (whatever that means) to a specific case, and this application always involves interpretation. This means that law is contextual. The result of its application differs depending on situation, time and place.

Law as an idea is the illusion that there are legal answers out there somewhere, ready to be discovered, described and applied. Lawyers live in a universe where this illusion is accepted, although every lawyer knows that this is oversimplified. There is rarely an obvious answer to a posed question, and there are often several different interpretations that can be made.

The legal universe is a universe of planets and orbits: different legal sources and jurisdictions, different legal traditions and ideas on how to interpret legal sources. There are numerous legal theories, perspectives and ideologies: legal positivism, critical legal studies, law and economics and therapeutic jurisprudence to name a few. The way we, the lawyers, choose to look at the law – the lens of our telescope if you like – affects how we perceive and decipher what we see.

Law is sometimes described as codified ethics. The legal system of a state often provides structures and systems for new technologies and medical progress. Therefore, law plays an important role when analyzing a state’s political system or the organization of its welfare system.

Law, in short, is a significant piece of a puzzle in the world as we know it.

This means that the idea of law as something concrete, something we can discover and describe, creates our perception of reality. Yet, we must be aware of the fact that the law itself is intangible, and answers to legal questions might differ, depending on whom (which lawyer) is making the analysis and which lens is being used.

Sometimes the answer is clear and precise, but many times the answer is vague and blurry. When the law seems unclear, it is up to us, the lawyers, to heal it.

We cannot accept “legal gaps”.

The very idea that law is a system that provides all the answers means that we must try to find all the answers within the system. If we cannot find them, we have to create them. Therefore, proposing and creating legal answers is one of the tasks for legal scholars. With this task comes great power. If a lawyer states that something is a description of what law is, such a description may be used as an argument for a political development in that direction.

Therefore the descriptions of what law is and what is legal within a field – especially if the regulation in the field is new or under revision – must always be nuanced and clearly motivated. If the statement as to what law is emanates from certain starting points, this should be clarified in order to make the reasoning transparent.

This is what I would like to call the ethics of legal scholarship.

It is worth repeating: Research within legal scholarship always requires thoughtfulness. We, the scholars, have to be careful and ethically aware all the time. Our answers and statements as to legal answers are always normative, never just descriptive. Every time an academic lawyer answers a question, the answer or statement might itself become a legal source and be referred to as a part of the law.

Law is constantly reconstructing itself and is, to some extent, self-sufficient. But if law is law, does that mean that all you need is law?

Moa Kindström Dahlin

Thinking about law - the Ethics Blog

 


Second issue of our newsletter about biobanks

June 2, 2015

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?

May 26, 2015

 

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

 


Online research ethics: A pedagogic challenge

May 19, 2015

Stefan ErikssonResearchers, scientists and professionals who are somehow involved in research, need to develop an ability to detect ethical problems. But we also need to learn how to do something about them. – How can we learn?

The Centre for Research Ethics & Bioethics (CRB) has developed a web-based training in research ethics. And now we are looking forward to a pedagogic challenge!

Research ethics is not only following rules and regulations. It is also about training your ethical competence. We have decided to use a new approach: a web based training that requires commitment from both teacher and student.

We emphasize interactivity. Research ethics is about learning from history and understanding how norms affect what we do. But research ethics is also about reflecting on your own attitudes and actions. This is why we believe that talking with others is important. We have added e-meetings to the training where we give every participant opportunities to discuss research ethical problems. In addition, every lesson has a theme and we use chatrooms to discuss related cases.

Last term we tested this concept on participants from Europe, Egypt and Singapore. Now it is time to launch our training and open it for participants from all over the world. Our aim is high: We want to offer the most complete, updated end enjoyable training you can imagine!

Online distance training has some advantages in itself: It is flexible for the student, relatively cheap and there are good opportunities to have individual support for your studies. Add the possibilities that a modern, digital learning environment can offer: video films that can be interactive, e-meetings, quizzes, TED lectures, discussions in chat rooms and more offer opportunities for both variety and having fun, learning and reflection on several different platforms. Sites that allow users to try randomizing participants in a study can create a greater understanding of how it is done rather than just reading about it. We collect all these resources in one place for students to reach whenever they want. This way, the focus is on students learning instead of teaching.

Having students from different backgrounds adds strength to the training, but it is also a challenge. An important aspect is to try and capture the different experiences and circumstances they bring to the course. Coming from different cultural environments, they will meet different challenges when they try to implement an ethical stance in their work. Participants can learn a lot from each other and increase their understanding of the conditions that other’s work under. But positions and traditions can also seem difficult to understand, or hard to put forth to others.

Online research ethics training for medicine & the life sciences - Centre for Research Ethics & Bioethics (CRB)Distance learning risks creating a situation where some participants are unable to take responsibility for their studies and hesitate to ask for help. Creating a positive, allowing atmosphere is not something that can be realized through the design of tasks or user interfaces (although those things matter too). It is something that you convey by the way to act towards others. There is a challenge for the teacher here: trying not to inhibit the student’s activities, or ending up on the outside of the group’s dynamic and development.

As a teacher, you soon realize that you have to work hard on both content and form. A difficulty is balancing the student’s freedom to plan the work to fit a schedule (that is probably quite busy already), with the aim to have interactive parts of the training that everyone has to be there for: both in time and progress. During the pilot it became obvious that students found it hard to follow the common time plan.

In the end, when people from different places can meet each other in a learning environment, exciting opportunities present themselves. One course can mix traditional teaching with different pedagogic models and technology. The challenge lies in finding a balance between the focus the training needs and the freedom that is so appreciated, and between structure and the endless pedagogic possibilities that this format offers. For the teacher, the task becomes to organize and guide students on the different paths that move them along in their individual learning processes. A challenge that I find both enjoyable and important!

Want to try it? Go to www.ethicstraining.crb.uu.se

Stefan Eriksson

We care about education


Risks are not just about numbers

May 12, 2015

Jessica Nihlén FahlquistOn a daily basis, we are informed about risks. The media tell us that obesity increases the risk of cardiovascular diseases and that we can reduce the risk of Alzheimers by eating the right kind of food. We are confronted with the potential danger of nanoparticles and mobile phone radiation. Not to mention the never ending discussion about nuclear power. Some news are more serious than others, but we cannot avoid risk information as such.

In addition to the media, government agencies inform the public about risks. The Swedish National Food Agency encourages people to eat fish because of its potential to reduce the risk of cardiovascular disease. But we should also reduce the intake of wild-caught salmon and herring due to the health risks associated with mercury.

Contemporary society has been described as a risk society, simply put a society preoccupied with risks. We invest a great amount of our common resources in risk management and communication. Sometimes, it appears as though risks are communicated in a hasty way. As soon as a risk is “found,” it is assumed that the responsibility of the government and possibly of the media is to inform the public. It is not acknowledged that what is considered to be a risk is not always straightforward and value neutral.

Whereas experts define risk as probability multiplied by negative outcome and weigh risks against benefits, several studies have shown that lay people conceive of risk in a much more complex and nuanced way. According to the expert notion, a risk is acceptable if the benefits outweigh the risks. However, individual lay people include other factors, for example, whether risks and benefits are distributed fairly and whether the risk has been taken voluntarily or it is one person exposing another to the risk. Studies in risk perception have also been acknowledged by ethicists and philosophers, who point out that not only do factors like voluntariness and fairness de facto influence people’s notion of the acceptability of risk, but we should care about these values. They are normatively important.

These insights about risk as ethically relevant and value-laden should influence how risks are managed and communicated in society. One example is how government agencies view risks and benefits in the case of infant feeding. Breastfeeding is seen as the best option in terms of risks and benefits. Mothers are expected to breastfeed their babies if they want to do what is best for their baby. Scientific and value-laden statements are mixed in the information provided to new parents. Women, adoptive parents and male gay couples who cannot breastfeed are negatively affected by this message. Women who cannot breastfeed oftentimes feel guilty and think that they are harming their babies for life by not breastfeeding. This should be taken into account when communicating with parents-to-be and new parents. The relationship between government agencies and ordinary people is inevitably unequal and the former should take responsibility for the effects of risk communication.

Another example is the H1N1 virus and the Pandemrix vaccination program in Sweden in 2009. The government informed the public that the vaccine was completely safe and that everybody should get vaccinated for solidarity reasons. After some time, it turned out that a group of teenagers had their lives more or less destroyed because they got narcolepsy probably due to the vaccination. This deserves a thorough ethical discussion.

There are currently signs that some people now hesitate to have their children take part in the regular vaccination program, including protection against, for example, measles. The regular vaccines are much more tested and substantially safer than Pandemrix. The opposition against vaccines are generally based on misconceptions and deficient studies. However, instead of mocking “ignorant” people and thinking that it is possible to change the perception and attitude of anxious parents by informing more about numbers, the anxiety and the lacking trust should be taken seriously. A respectful dialogue is needed.

This does not mean that the opponents of vaccination have the same and as accurate information as proponents of vaccination, who have science on their side. However, risks are not just about numbers!

Read more:

Jessica Nihlén Fahlquist

We care about communication - the Ethics Blog

 


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